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The Official Publication of Volunteer Youth Leaders for Health - Philippines
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    • The Rare Disease Bill was first filed in 2009 and it took three Congresses (14th, 15th and 16th) spanning almost seven years before it was enacted.
    • On its third and final reading, lawmakers unanimously approved the bill in both Houses of Congress.
    • President Benigno Aquino III signed RA 10747 or the Rare Diseases Act of the Philippines on March 3, 2016 - the first formal observance of World Birth Defects Day in the country.
    • RA 10747 is an act promulgating a comprehensive policy in addressing the needs of persons with rare disease.


    Health Promotion and Advocacy Update
    Series of 2016


    Photo: VYLH-Philippines/National
    Rare Disease Week Facebook Page
    A THROWBACK.Rare disease bills were first filed in 2009 during the third regular session of the 14th Congress. It was filed again in 2010 when the 15th Congress started. However, the bill only reached the committee level for both attempts.

    In 2013, numerous rare disease bills were filed in the two Houses of Congress. In the 16th Congress, nine rare disease bills were filed in the House of Representatives while five were filed in the Senate. As compared to the two previous Congresses and the early years of the 16th Congress, much of the legislative developments for the proposed bills happened in 2015 with both Houses consolidating rare disease bills, and rare disease bills passing beyond the committee level.

    At the plenary level, the rare bills gained high approval on its third and final reading as reflected by the unanimous votes among lawmakers (204-0 and 16-0). The House of Representatives was able to vote on the bill in August while the Senate followed in December. 

    Before going into its Christmas break, the Lower House approved the Senate's bill as an amendment to its version which made the bill skip bicameral proceedings. The consolidated version reached the President's Desk for his signature and approval on February 2016 and it was eventually signed on March 3, 2016. The day is also the first formal observance of World Birth Defects Day in the Philippines.




    THE LIST.Here are the TEN (10) Key provisions of RA 10747 or the Rare Diseases Act of the Philippines:

    1. Rare Disease Patients are PWDs

    Under the law, patients with rare disease will be considered as persons with disabilities. With this, they will also enjoy the rights and benefits of persons with disabilities (PWDs) under RA7277 or the Magna Carta for Disabled Persons, as amended.

    2. A Healthcare System for Rare

    The Department of Health (DOH) together with the National Institutes of Health (NIH-UP Manila) shall create a system for the identification, management and registration of persons with rare disease.
    Under this system, all rare disease patients shall:
    • be referred to a Regional Newborn Screening Continuity Clinic (NSCC) 
    • be included in the National Rare Disease Registry, a secured health information system on the data on rare diseases, persons with rare diseases, orphan drugs and products.
    • have better access to a support system through the Rare Disease Management Program, a comprehensive program that encompasses diagnosis, clinical management, genetic counseling, and drug research development. 

    3. The RDTWG 

    The DOH shall organized the Rare Disease Technical Working Group for the identification of rare diseases, orphan drugs and orphan products.

    4. Reporting to the Registry

    Healthcare institutions and practitioners are required to report diagnosed cases and the status of patients to the Rare Disease Registry. 

    5. A Practitioner's Responsibility

    A healthcare practitioner attending to a person with a rare disease has the responsibility of informing patients and their families of available resources and the nearest available specialist.

    6. Continuing Education and Training Programs

    The DOH, together with the NIH, professional societies and academic institutions shall conduct continuing education, information and training programs for healthcare practitioners on the identification, referral, and medical management of persons with rare disease.

    A system that would train a sufficient number of medical specialists to diagnose and manage persons with rare disease will also be developed by the DOH and the NIH.

    7. Public Education and Information Campaign

    The act recognizes the importance of a "culturally-sensitive public education and information campaign" on the nature of rare disease in helping the public understand the special needs of persons afflicted with rare diseases, as well as their right against ridicule and discrimination. Such campaign would involve the participation of concerned government agencies, professional societies and non-government organizations. 

    8. Inter-agency Action

    Government agencies such as the DOH (as lead agency), Food and Drugs Administration (FDA), NIH-UP Manila, DILG, DepEd, DSWD, DOLE, DOST and other related agencies shall be involved in the implementation of the Rare Disease Act.

    Four agencies namely the DILG, DepED, DSWD and DOLE were tasked to ensure that persons with rare disease are given the opportunity to be productive members of society and that they are given the same rights and benefits as PWDs.

    9. Medical assistance for Rare Disease Patients

    Medical assistance under the Philippine Health Insurance Corporation (PHIC/PhilHealth) and the Sin Tax Reform Act (RA10351) shall be given to persons with rare disease.

    10. Tax and Custom Duties Exemption

    An exemption on taxes and custom duties shall apply to all donations intended for research on rare diseases. maintenance of the rare disease registry, and the purchase and importation of orphan drugs and products for use solely by patients with Rare Disease, as certified by the FDA.

    For a complete copy of RA 10747, visit the Official Gazette. #RPascual



    The bill for a Rare Disease Act of the Philippines has gained congressional approval with the passage of the bill at...
    Posted by National Rare Disease Week Philippines on Sunday, February 21, 2016



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    Written by Lera Almendral (I3)

    Batch Kabilin (Western Visayas) together with the facilitators and invited guests.


    The Volunteer Youth Leaders for Health-Philippines welcomed Batch Kabilin, the newest batch of volunteer youth leaders during the Western Visayas Regional Camp held at Bacolod Pavilion Hotel last April 9-10, 2016. Kabilin is the Cebuano word for heritage and legacy.

    Camp Starters. Volunteer Youth Leaders participating in the games "Hammer" and
    "How well do you know your co- camper?"

    With the theme, “Revolutionizing health promotion through youth participation”, the two-day camp introduced the participants to the organization and prepared them to be part of VYLH-Philippines. A total of 39 youth volunteers were able to qualify for the camp, 16 of which came from Negros Occidental and 23 from Panay Island provinces. Meanwhile, the camp was facilitated by selected volunteer youth leaders (VYLs) from prior batches (Pioneer, I3, K4 and Hiraya) as part of the tradition and conscious effort of the network of preserving its formation and heritage from each generation of VYL to another.






    Notable individuals were also invited in the camp to discuss about the programs and progress of the organization - Dr. Renilyn Reyes (Updates on NBS and DOH Programs), Mr. Val Peter Billiones (Youth, Volunteerism and NYC Programs), Ms. Yugie Caroline Demegillo RN (Newborn Screening) and Ms. Aster Lynn Sur (Pre-conception Health and Birth Defect Surveillance). The lecture on Folic Acid and its importance in the prevention of neural tube defects, and the Orphan Disorders advocacy of the network was discussed by Dr. Camilie Potato who is also a pioneer volunteer of the network. 







    After dinner, the group proceeded to the much awaited team building activities and commitment ritual. During the team building, the participants were divided into groups composed of five members. Each group had to prepare a yell and perform it in front of the crowd and they have to complete the given tasks from each station. Indeed, each station taught all the members of the team the essence of hardwork, patience and teamwork—all of which are very important factors in the success of an event or an organization. The team building activity was then followed by the commitment ritual. The activity is basically the most significant part of the camp wherein each volunteer will have to solemnly pledge and uphold the principles of the organization. In the activity, the volunteer youth leaders were reminded that being a volunteer entails a lot of positivity and selflessness. The previous volunteers also wrote down love letters for the new set of volunteers to inspire them on their journey as members of VYLH-Philippines as well as to welcome them into the family. Afterwards, candles were lit one by one to symbolize burning desire and passion of the youth in building a healthier nation through the network’s advocacies. 

    The VYLH-Philippines Commitment Ritual
    During the second day of the camp, senior volunteer youth leaders of the network served as lecturers. VYLH-Philippines National President Christian Emmanuel Enriquez RN discussed the Role of the Youth in Health Issues while National Secretary Zapphire Zamudio talked on social media and the Filipino youth volunteer. After the lectures, Visayas Cluster Coordinator John Paul Oira facilitated the seminar-workshop on action plan construction and youth mobilization.

    The series of lectures was followed by the regional planning session and the plenary presentation of provincial plans. During the regional planning session, the participants were divided into two large groups namely Negros Occidental and Panay Island to come up with different activities for each specific province.   

    Day 2 Speakers and the Regional Planning Session
    The camp ended with the showcasing of cultural presentations of the facilitators and the new volunteer youth leaders. The facilitators opened the VYLH-Philippines Social’s and Talent Expo segment of the camp as they danced to the tune of "Ang Sarap Maging Pilipino". Volunteers from Negros and Panay proudly exhibited their culture through the colorful festivals in their respective places. Definitely, VYLs are not only excellent in terms of volunteerism. We are also equally talented!


    To new batch of youth volunteers, Batch Kabilin, we warmly welcome you all to the Volunteer Youth Leaders for Health-Philippines! Thank you for accepting the challenge to be part of this growing family. Soar high and keep on pushing! Aton ini! (Atin ito, This is ours!)

    ***

    CALL FOR APPLICATIONS: After the success of the Western Visayas leg last April, we're now heading east! Calling all youth leaders of Central Visayas (Cebu, Bohol, Negros Oriental, Siquijor) and Eastern Visayas (Biliran, E. Samar, N. Samar, Samar, Leyte, S. Leyte).The camps are scheduled to be held on August and September 2016, respectively.



    _______________
    Lera Almendral @liralew is a BS Medical Technology graduate from Silliman University and currently works at the Silliman University Institute of Clinical Laboratory Sciences. She is one of the camp facilitators and member of the Social Media committee during the camp.

    Editor: RJPascual


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    Written by Tricia Carmona (Kabilin)

    Welcoming Batch Kabilin. VYLH-Philippines held its first camp in Western Visayas last April 9-10, 2016 with youth participants from Negros Occidental and Panay Island provinces. In photo: the new volunteer youth leaders in  their cultural attire.

    Picture this: We are living in a nation where young people can thrive and pursue their passions. They are well-educated and are taking charge of their lives. They empower themselves and the people around them, making them great leaders and parents in the future. 

    This is the change our country badly needs right now.


    Hence, an organization named, Volunteer Youth Leaders for Health - Philippines (VYLH-Philippines) conducted its first regional camp in Western Visayas with the theme, "Revolutionizing health promotion through youth participation", held on April 9-10, 2016 at Bacolod Pavillon Hotel. The event hosted 39 delegates, majority of which are college students from different universities and colleges in Negros Occidental and Iloilo.

    VYLH - Philippines is a network of pro-active, service oriented, empowering, and visionary leaders equipped with knowledge and skills in mobilizing the youth towards a healthy Philippines. It was formally established in 2009, through the collaboration of the Institute of Human Genetics of the National Institutes Health-University of the Philippines Manila, the Department of Health (Republic of the Philippines) and The UPLB Genetics Society, a student organization of the University of the Philippines Los Baños. Since then, the network has trained more than 600 volunteer youth leaders coming from almost 200 youth organizations from various parts of the country. 

    This organization aims to promote awareness about the ongoing health issues in the Philippines and to encourage the youth and public to take necessary actions to prevent debilitating conditions such as preventable birth defects, as well as infant death and mental retardation from congenital metabolic disorders detected through newborn screening. The network also enjoins the youth and the public in promoting awareness and supporting Filipinos with rare or orphan disorders.

    During the Western Visayas Camp, the lectures from senior volunteer youth leaders, and team building activities facilitated by the network gave significant takeaways which could be applied in daily life. Here are a few:

    • Health should be the right and responsibility of everybody. The cliché statement, “Health is wealth.” is best felt when someone becomes seriously ill. Therefore, people should be given access to quality and affordable healthcare. Aside from these they should be made aware of necessary pro-active and preventive interventions. For example, a couple planning to start to family should ask for preconception health consultation and take folic acid as part of their supplements in order to lessen the risk of neural tube defects. On the other hand, a pregnant mother has to save up and avail of PhilHealth, so she could suffice her child’s needs such as newborn screening. This is an important preparation for the out-of-pocket costs of expanded newborn screening. 
    • Do things out of passion. When people do things out of love and passion, the formidable tasks become lighter and fulfilling. It also creates a ripple effect on other people that it inspires them to pay it forward.
    • Be stubborn about your goals and flexible with your means. This thought-provoking statement basically summed up the camp’s message to its delegates. Young people have a long way ahead and they have all the time in the world to set goals, commit mistakes and take detours when needed. After all, we learn best from our mistakes and not from our accomplishments.

    In the end, regardless of one’s age and socio-economic status, everyone must find their passion and work towards achieving it. It is never too late for anyone to be someone they want to be.

    ____________________
    Tricia Carmona is one of the successful applicants and newest volunteer youth leaders from Batch Kabilin. The Western Visayas Regional Camp accepted interested applicants through a standard online application procedure facilitated by the cluster secretariat and approved by the cluster coordinator and adviser. Tricia is a nurse by profession. She works in Bacolod.

    Editor: RJPascual

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    K4 Health Community Youth Training Program completers.
    Photo: The UPLB Genetics Society
    Compiled by Ryan Pascual (Pioneer)

    Standing firm on its commitment to promoting health-related advocacies, The UPLB Genetics Society (GeneSoc) spearheaded the engagement of Volunteer Youth Leaders for Health (VYLH)-Philippines with the community youth in a pilot project called K4Health Community Youth Training Program last June 7-9 in Nampicuan, Nueva Ecija.

    Rooted to the meaning of K4, "Kabataan Kabalikat ng Komunidad para sa Kalusugan,” the said training program led to the organization and establishment of a community-based VYLH core group in the host local government unit under the direct supervision of the Local Government Unit's (LGU) Health Officer.


    GeneSoc, along with its activity partners, hopes that the first VYLH – LGU partnership of this kind will be replicated in other locations in the country.

    The K4Health Community Youth Training Program was made possible through the support given by the Department of Health - Central Luzon Regional Office, Newborn Screening Center - Central Luzon, Institute of Human Genetics - NIH UP Manila, and the Municipality of Nampicuan, Nueva Ecija. The UPLB Ugnayan ng Pahinungod is also one of this program's preparatory training partners.

    To learn more, visit GENEWS, bit.ly/k4healthpilot and the GeneSoc K4Health page, http://bit.ly/1tbevEo


    ___________________
    Ryan Pascual (@rypascual) is a BS Biology major in Plant Biology graduate from the University of the Philippines Los Baños (2010) and an MS student at UP Diliman. He is a proud member of The UPLB Genetics Society where he served as Education Committee Head (2008-09) and Folic Acid Campaign Committee Head (2009-10). He is also the first National President of VYLH-Philippines (2011-12). 

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    Resource persons, speakers and guests of the SLF on Folic Acid. (Photo: NAST-PHL @NASTPHL)

    MANILA, Philippines – The National Academy of Science and Technology Philippines (NAST-PHL) held a Science Legislative Forum (SLF) on Folic Acid last June 28, 2016 at Hotel Jen Manila. The forum organized by the Health Sciences Division of NAST-PHL was attended by delegates from concerned government agencies, congressional health committees, local and international non-government organizations (NGOs), and the academe. 

    Studies have shown that the intake of folic acid or vitamin B9 from supplements and fortified food can significantly reduce the risk of neural tube defects (NTDs) or problems on the development of the baby’s brain and spine. NTDs comprise the second most common group of serious birth defects and these may result in immediate infant death, deformity or disability. Although there are efforts directed  towards increasing awareness, knowledge and consumption of folic acid, the full potential of folic acid to reduce the risk of NTDs has not yet realized in most countries, including the Philippines.

    According to Dr. Carmencita Padilla, activity focal person and NAST Academician, the SLF represents “an important day for women”.  UP Manila Chancellor Padilla also noted that women in the reproductive age needs to take the vitamin not only for good health but also for saving babies from NTDs. In the latter, women planning to get pregnant should take the vitamin at periconception or the period before becoming pregnant and during the early months of pregnancy. 


    The SLF on Folic acid aims to review the global and Philippine burden of neural tube defects, review experiences in increasing folic acid intake globally and in the Philippines, and orient various stakeholders on the proposed legislation on folic acid supplementation, fortification and public education.

    Local and international experts served as resource persons for the SLF. The Philippine General Hospital head of Pediatric Neurology Dr. Marissa Lukban discussed the burden of neural tube defects in the Philippines while PGH Director Dr. Gerardo Legazpi talked on surgical management of patients with NTDs. Both Lukban and Legazpi noted that surgical procedures and life-long co-morbidities of disabling NTDs are costly. Long-term management of NTD patients may require frequent hospitalization and affect the family's productivity.

    On the other hand, Dr. Robert John Berry of the US Centers for Disease Control and Prevention – National Center on Birth Defects and Developmental Disabilities discussed folate deficiency and insufficiency, as well as the role of folic acid in the reduction of NTDs as supported by scientific studies. Berry pointed that aside from deficiency, folate insufficiency is a new category of folate status that requires the same attention as deficiency since both folate deficiency and insufficiency present a risk for NTDs. He also presented other recently reported benefits of folic acid and reviews on its safety. 

    Food fortification was also discussed in the SLF. Dr. Helena Pachon, a senior nutrition scientist of the Food Fotification Initiative (FFI) discussed global experiences in increasing folic acid intake through fortification of staples while Ms. Maria Lourdes Vega of the Nutrition Policy and Planning Division of the National Nutrition Council focused on the successes and challenges of food fortification efforts in the Philippines. Pachon emphasized key messages on folic acid fortification of staples such its beneficial effect of reducing the risk of NTDs and its greater effectivity compared to supplementation. She also noted that the Philippines is one of the five countries mandating wheat flour fortification, unfortunately the existing fortification law does not include folic acid. Vega, on the other hand, disclosed that the local flour industry has expressed openness to the idea of mandatory folic acid fortification.

    The last talk of the SLF centered on the highlights of the proposed legislation on folic acid. Dr. Padilla noted that the proposed bill presents a comprehensive approach on folic acid awareness promotion and increasing the folic acid consumption through fortification and supplementation. Padilla is the chief proponent of the Newborn Screening Act (RA9288) and the Rare Diseases Act of the Philippines (RA10747). 

    Reactions on the proposed legislation were given by Incoming Health Secretary Dr. Paulyn Rosell-Ubial andthe Committee Secretary of the House of Representatives Committee on Health Ms. Maria Lourdes Sanchez. Secretary Ubial, through a video message, indicated her support to the proposed legislation and emphasized the Duterte administration’s concern to the health needs of the poor. 

    Meanwhile, Sanchez  gave an overview on the prioritization of bills in the House Health Committee and mentioned that a bill on folic acid education authored by Congressman Rufus Rodriguez was first filed in the House of Representatives during the 14th Congress. The said bill, House Bill 2651, was able to pass third and final reading in 2008. However, it was not acted upon in the Senate. Other folic acid bills in succeeding Congresses also did not prosper. According to Sanchez, the previous approval of the folic acid bill in final reading may help in the approval of a new bill in the House Committee, along with its inclusion to the legislative agenda of the DOH.

    Sanchez also suggested other legislative strategies aside from filing a unique and independent bill. She recommended the possibility of expanding the Food Fortification Act (RA8976) through an amendment, or the inclusion of interventions for folic acid promotion and consumption in the proposed First 1000 days bill. 

    The SLF concluded with the synthesis of the discussions presented by UP Manila Vice Chancellor for Research and National Institutes of Health (NIH) Executive Director Dr. Eva Maria Cutiongco-de La Paz.#RPascual






    VYLH-Philippines is again grateful to NAST-Philippines for considering the youth network as one of the participants and the representative of the youth to the Science Legislative Forum.
    __________________



    Ryan Pascual (@rypascual) is a BS Biology major in Plant Biology graduate from the University of the Philippines Los Baños (2010) and an MS student at UP Diliman. He is a proud member of The UPLB Genetics Society where he served as Education Committee Head (2008-09) and Folic Acid Campaign Committee Head (2009-10). He is also the first National President of VYLH-Philippines (2011-12).

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    MEDIA RELEASE

    This July 18, Volunteer Youth Leaders for Health (VYLH) – Philippines, a national collaboration of youth leaders of youth organizations in universities and communities in the Philippines, will be launching the first National Social Media day for Folic Acid Awareness, #FolicAcidPH. The social media activity which coincides with the observance of National Nutrition Month and National Disability Prevention and Rehabilitation Week aims to increase public awareness on the folic acid, its sources, and its role in good health and the prevention of neural tube defects (NTDs).   

    Studies have shown that the intake of folic acid or vitamin B9 through supplementation and food fortification can significantly reduce the risk of neural tube defects (NTDs) or problems on the development of the baby’s brain and spine. NTDs comprise one of the most common group of serious birth defects and these may result in immediate infant death, deformity or disability. Although there are efforts directed towards increasing awareness, knowledge and consumption of folic acid, the full potential of folic acid to reduce the risk of NTDs has not yet realized in most countries, including the Philippines.

    In the Philippines, awareness on the significance of folic acid supplementation among Filipino women in reproductive age is presumed to be low. Furthermore, folate deficiency has been determined to exist. According to the 7th National Nutrition Survey by the Food and Nutrition Research Institute-DOST, 1 in every 5 pinays of childbearing age is folate deficient. Hence, there is a need for increasing public awareness on this matter, especially in the absence of a legislation on folic acid fortification, supplementation and public education.

    In order to promote public awareness, #FolicAcidPH will utilize Facebook, Twitter and Thunderclap as its major online platforms. Suggested tweets, status messages and infographics will also be provided by the youth network. Aside from these, interested youth groups, government agencies, and non-government organizations are invited to join the cause and become a partner of the social media campaign.

    Aside from the social media campaign, VYLH-Philippines will also be celebrating its 7th Founding Anniversary. It was on the night of July 18, 2009 when its pioneer batch composed of 78 volunteer youth leaders accepted the challenge of promoting folic acid awareness as one of the flagship health advocacies of the network.

    For more details about #FolicAcidPH, please visit bit.ly/folicacidph or the official campaign Facebook page (fb.com/folicacidph). 



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    PRESS RELEASE
    NAST-DOST*

    The National Academy of Science and Technology, Philippines (NAST PHL) gathered stakeholders from the health and nutrition sector, representatives from the legislative body and other concerned government agencies, the academe, the private sector, and the pharmaceutical industry on June 28 at Hotel Jen Manila for a Science Legislative Forum (SLF) on Folic Acid. 


    Resource persons, speakers and guests of the SLF on Folic Acid. (Photo: NAST-PHL @NASTPHL)

    The objectives of the SLF were to review the global and Philippine burden of neural tube defects; review the burden of folic acid deficiency and insufficiency in the Philippines; review evidence for, impacts of, and safety of increasing folic acid intake; review experiences in increasing folic acid intake globally and in the Philippines; to orient the various stakeholders on the proposed legislations on folic acid supplementation and fortification; and discuss the role of government agencies, the academe, and the private sector.

    The participants of the legislative forum were welcomed by Academician (Acd.) Fabian M. Dayrit, acting president of NAST PHL. One of the mandates of NAST PHL is to serve as an adviser to the government and the scientific community on policy formulation. Through the initiatives of Acd. Carmencita D. Padilla, member of the Health Sciences Division (HSD) of NAST PHL and focal person of the SLF on Folic Acid, the Rare Disease Act or the Republic Act No. 10747 was signed into law by President Benigno Aquino III. Its stakeholders can be traced from a successful legislative forum that captured cohesive inputs for the advocacy of the said act.

    As there no are existing folic acid fortification efforts in the Philippines and supplementation efforts have achieved low coverage, there is a need to put a comprehensive policy in place not only to increase the awareness and knowledge on how folic acid can prevent NTDs but also to improve the maternal health of every Filipino mother and woman of child-bearing age; hence the conduct of a legislative forum for folic acid fortification and supplementation, Acd. Dayrit stressed.

    Folate is a B-vitamin that plays a significant role in preventing birth defects particularly of the baby’s brain and spine, which are collectively known as neural tube defects (NTDs). Folic acid is the synthetic form of folate that occurs in fortification and supplementation.

    Dr. Marissa B. Lukban, head of Section of Pediatric Neurology, Departments of Pediatrics and Neurosciences at the Philippine General Hospital (PGH), Manila, discussed the burden of neural tube defects in the Philippines. According to the data she presented, the occurrence of NTDs in the Philippines General Hospital is 23 per 10,000 live births; there is no available national data. She emphasized on the underreporting of cases in the Institute of Human Genetics Birth Defects Registry and the discrepancy among the regions, primarily because of varied reporting by the hospitals. 

    Dr. Robert John Berry, medical epidemiologist of Prevention Research Branch, National Center on Birth Defects and Developmental Disabilities, US Centers for Disease Control, discussed the evidence for reduction of NTDs, other benefits, and safety of increasing folic acid intake. He clarified that there is a difference between folate deficiency and insufficiency – that folate deficiency commonly results to clinical anemia and homocysteine deficiency while folate insufficiency is attributed to the occurrence of NTDs. According to the data derived from numerous studies, as red-blood cell folate concentration increases, the NTD risk decreases. Despite the positive result of clinical studies on folic acid and folate, it is important to consider and identify potential adverse effects of folate because science, as Dr. Berry emphasized, is incapable of proving safety. He demonstrated however that reviews of high quality data show no adverse effects of folic acid and hence the evidence of the benefits of folic acid currently far outweigh any evidence of risk.

    Dr. Helena Pachon, senior nutrition scientist of Food Fortification Initiative, discussed the global experience in increasing folic acid intake. Her presentation can be summarized into the following main statements: 1) fortification with folic acid reduces the risk of NTDs, 2) fortification with folic acid is more effective than supplementation or dietary diversification for reducing the risk of NTDs, 3) mandatory fortification with folic acid is more effective than voluntary fortification, and 4) fortification with folic acid can also reduce folate deficiency and folate-deficiency anemia. She mentioned that the Philippines is one of the only five countries that mandates the fortification of wheat flour but does not require folic acid and this is an opportunity for reducing the occurrence of NTDs in the Philippines. Based on estimates of NTDs in the Philippines, and impacts that have been achieved by other countries, fortification with folic acid could prevent between 3,000 and 3,500 babies from being born with a neural tube defect per year. She also presented data from the 2008 National Nutrition Survey of the Food and Nutrition Research Institute which suggests that 40-60% of reproductive age women in the Philippines are folate deficient; a substantially larger proportion are therefore folate insufficient and at risk of NTDs.

    Ms. Maria Lourdes A. Vega, chief of Nutrition Policy and Planning Division, National Nutrition Council, discussed fortification efforts in the Philippines: its successes and challenges. She emphasized on the importance of food fortification as a global strategy for preventing micronutrient deficiencies and a cost-effective means to address malnutrition. The Philippines, as she stated,  has already legislated fortification of salt, wheat flour, cooking oil, rice and sugar but implementation, especially of salt, rice and sugar is not optimal. One of the major constraints is non-compliance to standards. The National Nutrition Council is therefore considering changes to the legislation, including the inclusion of folic acid fortification of flour.

    Dr. Gerardo D. Legaspi, director and neurosurgeon of PGH, Manila, discussed the surgical management of patients with neural tube defects (NTDs). He discussed the epidemiology, pathophysiology, and treatment of several types of NTDs such as encephalocele, spina bifida, myelomeningocele, and anencephaly. He shared information on the extremely high costs of surgery for NTDs in private hospitals and impacts to quality of life to patients and their families.

    Acd Padilla, chancellor of the University of the Philippines (UP) Manila, presented the highlights of the proposed legislation on folic acid. Is there a need for legislation? Asked Dr. Padilla. She gave an overview of the journey of the Newborn Screening Act of 2004 or the Republic Act 9288; highlighting the importance and impact of a legislation in implementing a healthcare program. 

    Among the highlights of the proposed bill are: to ensure that every woman of reproductive age has access to food and food products containing folate and folic acid and folic acid supplements to reduce the risk of miscarriage and having babies with neural tube defects and other birth defects; to ensure that there is adequate supply of folic acid-fortified food and food products and folic acid tablets at an affordable price; to ensure that there is sufficient and correct information on the role of folate and folic acid for women of reproductive age and their children; to ensure the creation of a sustained inter-agency collaboration for the aggressive implementation and monitoring of this Act; and to foster collaborative undertakings in continuous research on folic acid food fortification and supplementation. 

    Dr. Paulyn Jean B. Rosell-Ubial, incoming Secretary and Assistant Secretary of Health, Office for Health Regulations, Department of Health, expressed her support for the bill to be included as one of the priorities of the incoming Duterte administration. 

    Ms. Maria Lourdes M. Sanchez, Committee Secretary, Committee on Health, House of Representatives is optimistic that the legislation of folic acid will be one of the banner programs of the 17th congress, alongside with education. She mentioned that a relatively significant bill has been submitted for enactment since the 12th congress up to the 16th congress, through the efforts of Representative Rufus Rodriguez.

    Dr. Eva Maria Cutiongco-De La Paz, Outstanding Young Scientist 2002, vice chancellor for research of UP Manila, and executive director of UP National Institutes of Health gave a synthesis of the discussions. She reminded the audience-turned-folic acid advocates of their responsibility as stakeholders and frontrunners of the proposed legislation on folic acid fortification and supplementation, which is to watch the State of the Nation Address that will be delivered by President-elect Rodrigo Duterte and to promote the public health significance of folic acid especially for child-bearing women.


    _________________
    *The National Academy of Science and Technology, Philippines (NAST PHL) is an attached agency of the Department of Science and Technology (DOST) and the country’s highest recognition and advisory body to the government and science community on issues concerning science and technology.


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    Public and private colleges and universities in Pangasinan participated in the orientation and seminar on newborn screening (NBS) conducted by the Volunteer Youth Leaders for Health (VYLH)-Philippines at the Nenas Garden Bed and Breakfast, Bonuan, Pangasinan, on March 18, 2016.

    Dr. Florencio Dizon, Newborn Screening Center–Central Luzon (NSC-CL) Unit Head, welcomed the some 45 students and department heads from University of Luzon, Lyceum Northwestern University, University of Pangasinan, Pangasinan State University, Colegio de Dagupan, and Virgen Milagrosa University Foundation.

    VYLH North and Central Luzon Cluster Representatives, Regional NBS Coordinators, and NBS Continuity Clinic staff facilitated the programs, which included orientation on VYLH, folic acid
    supplementation, NBS panel of disorders , Rare Disease Act of the Philippines, and the Expanded
    Newborn Screening. ADoctolero



    Originally published on the March-April 2016 Issue
    Newborn Screening, the Official Newsletter of the
    Newborn Screening Reference Center



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    Global Genes, one of the leading rare disease patient advocacy organizations in the world has selected Dr. Carmencita Padilla as one of the 2016 Rare Champions of Hope. Dr. Padilla will receive a “Rare Champion of Hope” recognition under the Medical care and Treatment -International category. 

    As published on their website, Dr. Carmencita Padilla, the current Chancellor of the University of the Philippines Manila was recognized for her “remarkable contribution to the rare disease community [which] has made her a beacon of hope for many in the Philippines. She is instrumental in creating genetic services at the Philippine General Hospital, which later became the Institute of Human Genetics of the National Institutes of Health-UP Manila. She introduced newborn screening for optimal health in the Philippines and is responsible for the Newborn Screening Act of 2004. Dr. Padilla is also Founding Chairman of the Philippine Society for Orphan Disorder and is again instrumental in the passage of the Rare Disease Act of the Philippines enacted March 2016, after 7 years of deliberating with 3 congresses. Her innovations are influential in providing all aspects of support and awareness about rare disease in the country and beyond." [1] 


    The Rare Champions of Hope award recognizes the notable efforts of individuals and organizations in rare disease advocacy, science, collaborative work, and medical care and treatment. According to Global Genes, over 350 individuals and organizations worldwide were nominated for the award this year. The awardees were selected by the Global Genes Board of Directors, Medical and Science Advisory Board and other key partners. 

    Dr. Padilla will be joining Gina Szanuk (Advocacy), Emily Kramer-Golinkoff (Advocacy), Elisabeth Linton (Advocacy - International), Peter Dankelson (Teen Advocacy), Dr. Elif Oral (Medical Care and Treatment), Dr. Ann Calof and Dr. Arthur Lander (Science), Dr. Illana Gozes (Science – International), Kelly Ranallo (Collaborations in Advocacy) and SOAR-NPC/Support of Accelerated Research for Niemann-Pick C (Collaborations in Science and Technology). 2016 Rare Champion of Hope awards will also be given to Dr. Philip Reilly, Sam Kimura and Alex Kimura. Reilly will also be receiving the Henri Termeer Lifetime Achievement Award, an award named after the former Genzyme President and CEO.

    This year’s honorees are scheduled to be recognized at a special award ceremony, the 5th Annual Tribute to Champions of Hope on September 23 at the Hyatt Regency Huntington Beach Resort and Spa, California, USA. Proceeds from the evening will benefit Global Genes’ education programs and the RARE Patient Impact Grant Program. 

    Global Genes is a non-profit organization which promotes the needs of the rare diseases community. The organization has led the creation and promotion of the unifying symbol of hope of the community – the Blue Denim Genes Ribbon. According to their site, the organization has evolved from a grassroots movement of rare disease parent advocates and foundations in 2009 to a network of over 500 organizations, worldwide [2].

    Dr. Padilla is the National Program Adviser of Volunteer Youth Leaders for Health (VYLH)-Philippines. # RPascual 


    Related Links:


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    NAMPICUAN, NUEVA ECIJA – The Local Government Unit (LGU) of the Municipality of Nampicuan through its Municipal Health Officer (MHO), Dr. Ron Allan Quimado in cooperation with The UPLB Genetics Society (GeneSoc) and Volunteer Youth Leaders for Health (VYLH) – Philippines established a community-based youth organization in a three-day training camp held last June 7-9, 2016.

    A total of 16 youth participants joined the K4Health training program sponsored by the Department of Health –Central Luzon Regional Office (DOH Regional Office III), Newborn Screening Center – Central Luzon (NSC-CL), Institute of Human Genetics (IHG) – NIH, UP Manila, and alumni members of GeneSoc. Preparatory training activities for facilitators were also made possible through UPLB Ugnayan ng Pahinungod and VYLH-Philippines.

    Barangay Service Point Ofiicers (BSPO), GeneSoc facilitators, and youth volunteers of Nampicuan assemble for a photo opportunity after the special portion of the training program intended for BSPOs (Photo: GeneSoc)

    The program title, K4Health (Kabataan for Health), strongly underscores the role of the youth in nation-building and their mobilization towards health promotion. The four “Ks” also mean “Kabataang Kabalikat ng Komunidad para sa Kalusugan”highlighting the need for the youth to effect change in their community.

    The training program, which is actually a pioneering joint project of VYLH-Philippines and GeneSoc in establishing a community-based VYLH Chapter, aimed to organize and mobilize the youth of Nampicuan towards birth defects prevention and newborn screening promotion.


    Lectures on community youth training, volunteerism and the present local health situation in the municipality were delivered by GeneSoc facilitators and the Municipal Health Officer, Dr. Quimado during the first day of the program conducted at Senior Citizen Hall. The outgoing municipal mayor, Hon. Cora Villanueva was also in attendance to support the program.

    Representatives from the event sponsors, DOH Region III and NSC-CL, also took part in delivering lectures and testimonials during the second day held at La Romana Countryside Haven, Anao, Tarlac.


    Dr. Janet Miclat of DOH Region III giving a talk on
    newborn screening and the initiatives of the Regional Office.
    Dr. Janet Miclat of DOH Region III emphasized in her lecture the importance of newborn screening (NBS) in saving babies from mental retardation and death by noting that “a simple drop of blood saves lives.” She also introduced the expanded NBS, capable of identifying 28 inborn errors as highly recommended to parents.

    She also reported that the NBS coverage in the region is already 72.14% as of 2015. However a call to assist the rural health unit in reaching out to pregnant women through the help of youth volunteers is highly necessary to achieve 100% coverage.

    Aside from youth participants, the event was also attended by Barangay Service Point Officers (BSPO) in the third day of the training program. Nampicuan BSPOs were given an orientation on preconception health for birth defects prevention. It is expected that the BSPO’s participation will be essential in complementing the planned activities of community volunteer youth leaders.

    Hands-on activities and teaching demonstration tasks were assigned to the participants to integrate the advocacies presented by VYLH-Philippines and evaluate their awareness about birth defects and other health-related issues.

    Problem tree analysis and commitment setting rites were also conducted in order to strengthen the Nampicuan youth as community volunteers. Induction of new members to VYLH-Philippines and the officers of VYLH – Nampicuan Chapter culminated the three-day training program.

    Moreover, the MHO Dr. Quimado agreed to act as the adviser of the community-based VYLH chapter.

    Meanwhile, the facilitators from UPLB GeneSoc vowed to conduct scheduled site visits in order to monitor the chapter’s performance and provide sustainable support in keeping the youth of Nampicuan active and innovative in attending to the needs of their community.

    VYLH-Philippines and UPLB GeneSoc hope that this type of partnership will be replicated soon in other locations in the country.

    Originally Published in GENEWS
    The UPLB Genetics Society


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    by John Romeo Dominick Diño (Kabilin)

    In the spirit of leadership, youth empowerment and promotion of maternal and child health, I embarked my journey on being an advocate for health in the Philippines.

    The Volunteer Youth Leaders for Health (VYLH) - Philippines conducted its Western Visayas regional camp last April 9-10, 2016 at Bacolod Pavilion Hotel in Bacolod City, Negros Occidental. Along with 39 other participants from different civic organizations, I was chosen to represent the Order of Asclepius in this annual event sponsored by the Department of Health and the Newborn Screening Center- Visayas.

    PASSION AND PURPOSE. Youth leaders gather as thet pledge their commitment in doing voluntary services
    on promoting public awareness and mobilizing the Filipino youth for health. 



    The two-day camp, facilitated by senior members of the VYLH-Philippines coming from different parts of Visayas, aimed to empower the youth in advocating health through all sectors, specifically in the promotion of maternal and child health. This included plenary sessions on important topics such as Updates on Newborn Screening and other DOH Programs by Dr. Renilyn Reyes, Youth, Volunteerism and National Youth Commission Programs by Mr. Val Peter Billones, Essentials of Newborn Screening by Ms. Yugie Caroline Demegillo and Preconception Health and Birth Defect Surveillance by Ms. Aster Lynn Sur. 

    VYLH-Philippines Pioneer member and fellow Asclepian Dr. Camilie Potato (Batch 34) presented the importance of folic acid in the prevention of neural tube defects. She also introduced the rare disease advocacy of the network by discussing the rights and needs of Filipinos with orphan disorders.

    The camp also included team-building activities, a commitment ritual and a planning session for the implementation of future projects and advocacies of the VYLH in Western Visayas.

    The Order of Asclepius has been affiliated with the VYLH since its establishment in 2009. Other Asclepians who became part of the advocacy were Dr. Rachel Anne Catague and Dr. Angeli Nicole Portigo, both from Batch 36.

    The organization’s efforts did not stop there, as the VYLH-Iloilo Chapter has been handing out informational materials such as brochures, as well as organizing awareness campaigns regarding the Maternal and Child Advocacy of the VYLH.

    Last May 7, 2016, I was invited to speak about our advocacies during a Newborn Screening and Folic Acid Supplementation Seminar at King's Kids Student Center in Brgy. Aganan Pavia, Iloilo. VYLH-Iloilo Chapter also actively handed out brochures on Newborn Screening and Folic Acid Supplementation in selected barangays within Iloilo City. Currently, the group is promoting its advocacies via social media in an effort to effectively target the Filipino youth.

    HEALTH PROMOTION. The residents of Brgy. Aganan in Pavia, Iloilo were informed of the benefits of newborn screening and the importance of folic acid supplementation by VYLH-Philippines Batch Kabilin - Iloilo (Jeff Hontoria, Dominick Diño, Jenn Bordon, Gladys Palmon, Jc Anasario,Karmela Samoro, Pia Duran and Luis Salvador)

    Being an Asclepian with the heart for service, my journey in advocating for a healthier Philippines has just begun.
    The Official Publication of the Order of Asclepius WVSU-CM
    Photos: JRDDiño


    ________________
    John Romeo Dominick Diño is a Nursing graduate of West Visayas State University. Currently, he is a Medicine student of the same university and a member of the Order of Asclepius.

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    Volunteer Youth Leaders for Health (VYLH) - Philippines was selected as one of the Top Model Youth Leadership Programs of 2016 by the global youth leadership program search, YouthLeadGlobal. 

    YouthLeadGlobal is a collaborative engagement of Leadership, Management & Governance (LMG) Project, United States Agency for International Development (USAID), International Youth Alliance for Family Planning and Youth Health and Rights Coalition. 

    The global review aims to identify and examine effective youth leadership programs, models and strategies from around the world that aim to improve health outcomes for the youth through leadership. Qualified programs give focus on the youth’s health, as well as nurturing their leadership and knowledge skills. Such programs must have demonstrated positive outcomes for the youth in general, including the development of health services of youth-oriented organisations and communities. Furthermore, these programs should provide opportunities for the youth to practice leadership.

    Since 2015, the global search has identified 11 remarkable youth leadership programs all over the world. Featured programs alongside VYLH (Philippines) are Global Changemakers (Switzerland), African Youth and Adolescent Network on Population and Development - Eastern and Southern Africa Region (South Africa), Project Jeune Leader (Madagascar), Uganda Youth Alliance for Family Planning and Adolescent Health (Uganda), Family Health Options Kenya (Kenya) and Hacey (Nigeria).

    Meanwhile, four organizations were recognized as Top Youth Leadership Programs in 2015: Women Deliver’s Young Leaders Program (USA), Center for Creative Leadership’s Leadership and Debate Program (Ethiopia), Emerging Leaders Foundation (Kenya), and GOJoven International (USA).

    About VYLH-Philippines 

    Volunteers Youth Leaders for Health – Philippines (VYLH-Philippines) is a national collaboration of youth leaders representing various organizations from universities and communities in the Philippines. VYLH is part of an international effort to establish the March of Dimes - Global Network for Maternal and Infant Health (GNMIH). The network event was participated by youth counterparts in China and Lebanon who are linked by the common interest of volunteerism and public service to improve birth outcomes worldwide through advocacy initiatives. Since its formation in 2009, VYLH has led the Filipino youth in promoting public awareness on folic acid and its role in the prevention of neural tube defects, newborn screening, prematurity awareness, preconception health, as well as the rights and needs of Filipinos with rare diseases.

    VYLH-Philippines is honored to be the first Asian and the first Filipino youth organization to be recognized in this global search. This commendation will certainly serve as an inspiration to the network in fulfilling its goal of empowering the Filipino youth for a healthier Philippines, as well as to continuously innovate the network’s initiatives in sharing health advocacies.

    Profiles of the identified youth leadership programs for 2015 and 2016 are posted online at http://youthleadglobal.org.#RPascual




    ___________________
    Ryan Pascual (@rypascual) is a BS Biology major in Plant Biology graduate from the University of the Philippines Los Baños (2010) and an MS student at UP Diliman. He is a proud member of The UPLB Genetics Society where he served as Education Committee Head (2008-09) and Folic Acid Campaign Committee Head (2009-10). He is also the first National President of VYLH-Philippines (2011-12). 

    Editor JABarredo




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    Does disability prevention begin in the womb? or earlier?“Prevention is better than cure” has always been a common and undoubtedly true saying. However, there is still a gap on how Filipinos carry this saying in preparing to have kids and start a family.

    Last July 23, 2016, VYLH-Philippines together with #HealthXPH conducted a TweetChat on Preconception Health (PreCon) for Birth Defects and Disability Prevention. According to the TweetChat statistics compiled using Symplur, the one hour tweetchat which started at exactly 9:00 in the evening peaked with 560 tweets on the topic coming from 37 participants composed of doctors, medicine students and health advocates.

    Moderated by Former VYLH-Philippines National President Ryan Pascual (@rypascual) with guidance from HealthXPh core collaborator Dr. Gia Sison (@giasison), the TweetChat session explored the possible reasons why preconception health consultation and awareness is not popular and the reforms or possible activities that can be done to improve PreCon awareness. The utilization of social media in improving PreCon awareness was also discussed. 

    The tweetchat is part of the 7th Founding Anniversary Week of VYLH-Philippines and the network's observance of National Disability Prevention and Rehabilitation Week. 


    Make a PACT for prevention is a campaign
    in improving birth outcomes and preventing
    birth defects Photo: US CDC

    What is Preconception Health? 

    Preconception health refers to the health of women and men during their reproductive years or the years they can have a child. It focuses on taking steps that are important in protecting the health of a baby that they might have in the future. Hence, preconception health is important in the improvement of birth outcomes, particularly in the prevention of preterm birth, birth defects and disability.

    There are a number of birth defects which are known to be preventable. These include neural tube defects or problems in the development of the brain and spine which are prevented through folic acid supplementation before pregnancy; and fetal alcohol syndrome by avoiding alcohol consumption during pregnancy and breastfeeding. 

    The US CDC further expounded the importance of preconception health by emphasizing that everyone, both men and women and whether or not they plan to have a child, can benefit from preconception health. Accordingly, preconception health (PreCon) is about people getting healthy throughout their lives.
    • For women of reproductive age: PreCon means taking control and choosing healthy habits and feeling good about life, whether or not they plan to have a baby someday.
    • As a partner: PreCon means encouraging and supporting the health of your partner and your family.
    • For the babies: Getting PreCon means giving them the best chance for a healthy start in life. Taking care of your health will help reduce the risk of your baby being born preterm or with a low birth weight, and will increase its chances of being born without a birth defect or other disabling condition.



    About #HealthXPH

    In December 2013, online "conversations" between healthcare social media advocates in the Philippines led to the genesis of #HealthXPh. According to its website (http://healthxph.net/), #HealthXPh is a collaborative platform by healthcare stakeholders such as healthcare professionals, healthcare institutions, academe, policy makers and patients to discuss and use, emerging technologies and social media to positively impact the Philippine health landscape. 

    Five doctors namely Drs. Iris Isip-Tan (@endocrine_witch), Remo Aguilar (@bonedoc), Gia Sison (@giasison), Narciso Tapia (@cebumd) and Helen Madamba (@helenvmadamba) comprise the core collaborators of #HealthXPh. 

    Since January 2014, the group has been hosting a regular TweetChat every Saturday from 9:00 to 10:00 in the evening. During the tweetchat, the group encourages stakeholders to participate in the discussion using the chat hashtag #HealthXPh. 

    Participants of the 2nd Healthcare and Social Media (#hcmsPH) held
    at the Philippine International Convention Center last
    April 21, 2016 (Photo: HealthXPh)

    The group has also organized the country’s Healthcare and Social Media (HCSMPH) Summit in 2015 and 2016. These events which covered major themes of HCSM such as ethics, policy, research, education, and advocacy have led to the creation of the manifesto on social media and medical professionalism, a social media research agenda, and the patient’s manifesto for social media.#




    For the analytics and transcript of the tweetchat, please visit the following links:
    Tweetchat Analytics | Transcript 

    ___________________
    Ryan Pascual (@rypascual) is a BS Biology major in Plant Biology graduate from the University of the Philippines Los Baños (2010) and an MS student at UP Diliman. He is a proud member of The UPLB Genetics Society where he served as Education Committee Head (2008-09) and Folic Acid Campaign Committee Head (2009-10). He is also the first National President of VYLH-Philippines (2011-12). 

    Cover Photo Modified from Mashable


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    Written by Gilbert Guy D. Murillo


    LA PAZ, ILOILO - The Asian Medical Students' Association – West Visayas State University (AMSA-WVSU) joined the Volunteer Youth Leaders for Health (VYLH) - Philippines in launching the First National Social Media Day for Folic Acid Awareness last July 18, 2016. The event, dubbed as #FolicAcidPH, had a main objective to increase public awareness on folic acid and its important role in the prevention of neural tube defects through a social media campaign. 

    AMSA-WVSU members and the students of WVSU College of Medicine participated in the said campaign by sharing infographics and posts from #FolicAcidPH Facebook page, joining the #FolicAcidPH Thunderclap, using #FolicAcidPH in posts and tweets, and posting photos with #FolicAcidPH campaign related fan signs and fan boards. 

    AMSA-WVSU further advanced the #FolicAcidPH campaign by holding a forum last July 30, 2016, in cooperation with VYLH-Philippines Iloilo Chapter. The “#FolicAcidPH and the Youth Forum” aimed to promote folic acid deficiency prevention and awareness through the initiative and commitment of the youth. The said activity was participated by representatives from WVSU College of Communication (COC).


    The Standing Committee Head on Research Exchange (SCORE), Gilbert Guy D. Murillo, delivered a talk to present the importance of folic acid especially women of reproductive age and pregnant women, and the current situation of folic acid awareness in the world and the Philippines. The talk was augmented by insights and professional advice by Dr. Ma. Lucille S. Rufon, an obstetrician-gynecologist. 


    After the talk, the participants were encouraged to formulate a project proposal that will uphold the #FolicAcidPH advocacy. AMSA-WVSU and VYLH-Philippines Iloilo representatives facilitated a small group discussion and guided the participants in proposal making. A certificate of commitment to the new collaboration was also signed by the organizing parties and COC representatives.# 




    Small group discussion and memorandum of commitment signing by the organizing parties and the
    College of Communication representatives.
    __________________
    Orignally Published in the AMSA Bulletin Vol. 1 No. 2 (August 2016)
    Official Publication of AMSA-WVSU
    Photos: AMSA-WVSU/GDMurillo


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    CAMPAIGN REPORT

    In observance of this year’s Nutrition Month and National Disability Prevention and Rehabilitation Week, the Volunteer Youth Leaders for Health (VYLH)-Philippines together with the Institute of Human Genetics, NIH-UP Manila launched #FolicAcidPH, the first National Social Media Day for Folic Acid Awareness last July 18, 2016. 

    Studies have shown that the intake of folic acid or vitamin B9 through supplements and fortified foods can significantly reduce the risk of neural tube defects (NTDs) or problems on the development of the baby’s brain and spine. NTDs comprise one of the most common group of serious birth defects which may result in immediate infant death, deformity or disability. 

    Although there are efforts directed towards increasing awareness, knowledge and consumption of folic acid, the full potential of folic acid to reduce the risk of NTDs has not yet realized in most countries, including the Philippines. At present, there is also no existing legislation on folic acid fortification, supplementation, public education and promotion in the Philippines. 

    The #FolicAcidPH social media campaign which aims to increase public awareness on folic acid, its sources, and its role in good health and the prevention of NTDs was able to gain the support and active participation of 49 partner organizations: 45 university-based organizations, 3 national student alliances/organizations and one non-government organization. The campaign was convened by VYLH-Philippines Former National President and Pioneer member Ryan John Pascual. 



    The following are the partner organizations of the inaugural folic acid awareness social media day:
    • Adamson Nursing Student's Association (Adamson University)
    • Philippine Association of Nutrition Psi Gamma Chapter (Collegio de San Juan de Letran)
    • Human Biology Association of De La Salle Health Science Institute (DLS HSI)
    • FEU Biological Science Society
    • Asian Medical Students Association (AMSA) FEU NRMF
    • Philippine Normal University - College Y Club
    • PNU Student Volunteers' Organization
    • PNU Biological Society
    • Philippine Association of Nutrition Alpha Epsilon Chapter  
    • Junior People Management Association of the Philippines-PUP Taguig Chapter
    • Social Action Medical Students Association - San Beda
    • UP Children’s Rights Advocates League (UP CRAdLe)
    • University of the Philippines Volunteers for Children (UPVFC)
    • The UPLB Genetics Society
    • Philippine Association of Nutrition Alpha Omega Chapter (UP Los Baños)
    • The UPLB Society of Pre-Med Students 
    • UPLB College of Human Ecology Student Council
    • TALAS UPLB
    • UP Health Sciences and Pre-Medicine Society (UP Manila)
    • UP Biological Sciences Society (UP Manila)
    • UP Manila Biology Majors Association/BIOMAS
    • Public Health Artists' Circle (UP Manila)
    • UP College of Allied Medical Professions Student Council (UP Manila)
    • SIBOL-PH (UP Manila)
    • Bigkis ng mga Iskolar para sa Bayan tungo sa Makabuluhang Pagbabago (BIGKIS-UP Manila)
    • UP Manila College of Public Health Student Council
    • Rotaract Club of UP Manila
    • ALAB (UP Manila)
    • The Public Herald
    • UP Pharmaceutical Association Student Council (UPPhA SC)
    • Young Empowered Advocates Towards Responsive Nursing  (UP Manila)
    • Future Physicians for Health and Human Rights (St. Louis University)
    • Alpha Mu Sigma Phi (Cebu Institute of Medicine )
    • Student Pharmacists Association  (Central Philippine University)
    • PH Pub (UP Visayas)
    • TAMBAL (University of St. La Salle)
    • Asian Medical Students Association (AMSA) - West Visayas State University (WVSU)
    • Order of Asclepius (West Visayas State University)
    • Microbia (West Visayas State University)
    • Central Mindanao University Supreme Student Council
    • CMU College of Human Ecology Student Council
    • CMU College of Education Student Council
    • Junior Nutritionist Dietitians Association of the Philippines – CMU 
    • CMU University Senior Student Council 2016-17
    • Philippine Association of Food Technologists, Inc.- Lambda Chapter (PAFT- λ UP Mindanao)
    • Alliance of Philippines Pre-Medical Societies
    • Association of Philippine Medical Colleges - Student Network (APMC-SN) 
    • Asian Medical Students' Association Philippines (AMSA Philippines)
    • HealthJustice Philippines

    Social Media Statistics

    With the overwhelming turnout and response of our partners and campaign supporters in Facebook, Thunderclap and Twitter, #FolicAcidPH has proven that the Filipino youth and the social media community are abled partners in building a healthier nation. 

    The campaign’s partner organizations and their members led the dissemination of campaign messages and infographics posted in the #FolicAcidPH Facebook page. As of July 18, the campaign page was supported by more than 1,100 users and an accumulated reach of 59,320 users. The page has also obtained more than 17,000 post engagements which include more than 6,800 post likes since the creation of the page on the start of the month. 

    In Twitter and Facebook, the campaign accumulated more than 85,000 reach and impressions. Moreover, the common #FolicAcidPH message was successfully posted through Thunderclap at exactly 6:00 PM of the campaign date with 333 supporters and a total social reach of 556,119. Social reach refers to the total sum of all of the campaign supporters’ friends and followers.

    Fansign photos in support of #FolicAcidPH were also posted online by supporters and participating organizations. Meanwhile, Facebook display photo campaigns were also organized by the UP Biological Sciences Society, UP Biology Major Association, and UP Manila College of Allied Medical Professions (CAMP) Student Council. 

    Media partners namely MommyBloggers Philippines, Doktor Doktor Lads, PH for PH (Public Health for the Philippines), the Public Herald (CPH-UP Manila) and the Philippine Information Agency (PIA) gave space for the promotion of the campaign in their platforms through the campaign media release. The Newborn Screening Reference Center-NIH, UP Manila also sent an email blast on the campaign to its network. 

    Bringing #FolicAcidPH on the ground

    In addition to social media participation, “on the ground” activities were also conducted by participating organizations. School-based and room-to-room campaigns were organized Junior People Management Association of the Philippines – PUP Taguig Chapter, Rotaract Club of UP Manila, BIGKIS-UP Manila, Student Pharmacists Association – Central Philippine University (Iloilo), Central Mindanao University College of Human Ecology Student Council (Bukidnon), and the Junior Nutritionist and Dietitian Association of the Philippines – CMU (Bukidnon). 

    VYLH-Philippines Nampicuan Chapter participated through fansigns with local leaders and separate advocacy discussions to senior high school students and parents. The group also joined the Nutrition Month Celebration of the Municipality of Nampicuan where volunteers had an advocacy display on folic acid at the event. They also gave a lecture on the importance of folic acid supplementation during the event. 

    Because of #FolicAcidPH, VYLH-Philippines was invited to attend the Regional Stakeholder's Forum organized by National Nutrition Council – NCR. With the theme “Setting the Child’s Future during the First 1000 Days”, the event held on July 21 at the Heritage Hotel, Pasay City was attended by more than 300 stakeholders from different LGUs, agencies, and sectors in Metro Manila. In the forum, "Folic Acid and Pregnancy” was discussed by Dr. April Grace Dion-Berboso, Assistant Director of the Institute of Human Genetics, National Institute of Health, UP Manila and Cluster Adviser of VYLH-Philippines NCR-South Luzon. 

    In Iloilo, the Asian Medical Students' Association West Visayas State University (AMSA West Visayas State University WVSU), in cooperation with VYLH Philippines-Iloilo Chapter, held a forum entitled “#FolicAcidPH and the Youth” last July 30. 

    The forum aims to promote folic acid deficiency prevention and awareness through the initiative and commitment of the youth which was actively participated by representatives from the WVSU College of Communication (WVSU-COC). The forum consisted of a short talk by an AMSA-WVSU representative and an open forum, facilitated by an obstetrician-gynecologist, Dr. Ma. Lucille S. Rufon. The participants were also encouraged to formulate a project proposal that will uphold the #FolicAcidPH advocacy. A certificate of commitment was also signed by the organizing parties and WVSU-COC representatives.

    About VYLH-Philippines

    Aside from the social media campaign, VYLH-Philippines also celebrated its 7th Founding Anniversary. It was on the night of July 18, 2009 when its pioneer batch composed of 78 volunteer youth leaders accepted the challenge of promoting folic acid awareness as one of the flagship health advocacies of the network.

    The Volunteers Youth Leaders for Health – Philippines (VYLH-Philippines) is a national collaboration of youth leaders of youth organizations in universities and communities in the Philippines. VYLH is part of an international effort to establish the March of Dimes - Global Network for Maternal and Infant Health (GNMIH) participated by youth counterparts in China and Lebanon linked by the common interest of volunteerism and public service, to improve birth outcomes worldwide through advocacy.

    Since its formation, VYLH has led the youth in promoting public awareness on folic acid and its role in the prevention of neural tube defects, newborn screening, prematurity awareness, preconception health, as well as the rights and needs of Filipinos with rare disease.#

    RPascual with reports from participating organizations.


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    Written by Kristofer Ralph Supil, RN (Hiraya, Dumaguete)



    Way up north in the island of Cebu, the waves splashed and glimmered from the sunbeams as the second leg of the Visayas cluster camps was about to commence. New volunteers from two regions, from five different provinces, came to grace the occasion. Surrounded by their ates and kuyas for the first time, new volunteers were welcomed in the best way possible, the VYLH style.

    The two days in the camp would prove to be monumental in their journey to become leaders in the Philippines. They signed up for something bigger than themselves.

    The delegates from the provinces of Cebu, Negros Oriental, Negros Occidental, Bohol, and Siquijor, took part in their very first step in becoming a volunteer youth leader for health. Popularly known as VYLH-Philippines, the organization has been running since 2009, slowly growing in number, and constantly strengthening its network with volunteer youth leaders who have a passion for leadership and health. These volunteers from different parts of the country are currently focusing on three advocacies: the campaign on folic acid awareness, the promotion on newborn screening, and the lobbying of support for rare and orphan disorders. The organization has been successful so far in mobilizing the youth in making a dent, a profound change, in history.

    With the efforts of the organizing committee and the support of the Department of Health Regional Office VII (DOH RO7), Newborn Screening Center Visayas (NSCV) and the Institute of Human Genetics (IHG-NIH, UP Manila), the second leg of this year's regional camp to usher in a new wave of passionate leaders was made possible.

    This year's camp for Region 7 was held last August 13-14 at Hisoler's Resort in Bogo City, Cebu. Various people came and willingly took part in sharing their knowledge and expertise to the young ones. Genetics Nurse Ms. Aster Lynn Sur from the Institute of Human Genetics in UP Manila, tackled the matter on folic acid awareness and our current situation in the country regarding the support for orphan disorders. All the way from Iloilo City, Newborn Screening Center-Visayas Project Development Officer and registered nurse Meryl Mae Tabaosares shared her knowledge on the Newborn Screening Program. The volunteers highly felt and acknowledged the support from the Department of Health's regional office as well through the Family Health Program Team, spearheaded by Dr. Emmelie Pfleider-Silao, the Medical Coordinator for the Newborn Screening Program, along with Newborn Screening Nurse Coordinators Ruff Vincent Valdevieso and Jaike Jel Besira. VYLH National President Christian Emmanuel Enriquez shared an inspiring talk on the role of the youth in health issues, while the Vice-President for Visayas, Engr. John Paul Oira presented a talk on Social Media and the Filipino Youth Volunteer. 

    The fun didn't stop there though as they capped off the first night of the camp with the traditional team building activities. For years, VYLH organizers and facilitators have been subjecting their delegates in intensive, rigorous, and more importantly, enjoying activities that enabled the "NewVs" to strengthen their leadership and group dynamics. A great sense of leadership and camaraderie would be very essential after they got out of the camp, and these were qualities that proved to be very much needed and became the reason why the organization had prospered over the years.

    Time flew very fast for those whose stars aligned and brought them to the camp. Nonetheless, their time at the camp had to end. With closing ceremonies of joyful recognition on efforts mixed with an emotional twist on parting and goodbyes, the Central Visayas Regional Camp was a huge success.

    As they went back home to their respective provinces, those two days in August would be remembered fondly by the participants. The crusade for making the youth matter doesn't stop here though. Just one of several moments in VYLH that volunteers will be looking forward to again.

    Keep the fire burning!

    __________________
    Kristofer Ralph Supil, RN completed his Nursing degree at Silliman University in 2010. He became affiliated to the network in 2015 as part of VYLH’s Batch Hiraya. At present, he is the Health Leadership and Governance Program Nurse and Health Leadership and Governance Program Project Assistant at the Department of Health – Central Visayas Regional Office (DOH RO7).


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    Written by Janelle Ruiz

    The Volunteer Youth Leaders for Health (VYLH)-Philippines, with support from the Department of Health – Eastern Visayas Regional Office (DOH-RO8) and Newborn Screening Center-Visayas (NSCV), welcomed new volunteers from Eastern Visayas in a youth camp held at San Juanico Park and Country Club, Tacloban City last September 17-18, 2016.  

    With the theme “Revolutionizing Health Promotion through Youth Participation”, the camp marked the first recruitment and training venture of the network in Region 8 and it was participated by youth leaders from Northern Samar, Eastern Samar, Biliran and Leyte. The camp was facilitated by volunteers from prior batches (Pioneer, K4, I3, E4 and Hiraya) as part of their commitment to the network and the tradition of passing the VYLH culture and practices to new volunteers.

    The camp opened with an introduction to VYLH-Philippines facilitated by NCR-South Luzon Cluster Coordinator Rufus Adducul (I3) and Visyas Cluster Secretariat Floyd Edrea, RN (Pioneer) which was followed by an inspirational video message from the national adviser Dr. Carmencita Padilla, MD, MAHPS. Meanwhile, National President Christian Emmanuel Enriquez, RN (K4) emphasized the role of the youth in health issues. 

    Invited guests graced the event and gave important talks related to the advocacies of the network. These include Ms. Yugie Caroline Demegilio, RN, MAP of NSCV on newborn screening; Dr. Lilibeth Andrade, Mr. Marvin Allen Guy-Joco, RN and Ms. Wenonah Wae Tutaan, RN on DOH programs and the progress of newborn screening in Eastern Visayas; Dr. Barbra Charina Cavan on the birth defect surveillance and the importance of folic acid supplementation; and Ms. Aster Lynn Sur, RN on preconception health and orphan disorders.    

    Similar to other VYLH youth camps,the camp will not be complete without the team building that is expected to ignite camaraderie and test the leadership skills of the participants. After the participants were divided into groups, each group prepared yells and completed the tasks given every station. Indeed, their hardwork, teamwork and patience paid off. All of the teams successfully finished the tasks.

    The most awaited part of the camp is the commitment ritual where the participants solemnly pledged to uphold the principles of the network, serve their community and share the advocacy of the network. During the solemn ritual, the facilitators lighted the candles with the names of the new volunteers as a sign of passing the legacy of the network.

    The second day of the camp started with the morning exercise and a talk from Engr. John Paul Oira (K4) on Social Media and the Filipino Youth Volunteer. After the talk, National Secretariat Ms. Aster Lynn Sur facilitated the seminar on action plan construction and youth mobilization. The participants were divided according to their province for the regional planning session.  

    But this was not the end of the two-day camp, as part of the VYLH-Philippines tradition, the new volunteers showcased their talents as each provincial group prepared traditional presentations. The facilitators were not exempted as they presented the traditional dance of Eastern Visayas, the Kuracha. 

    The Region 8 camp may have ended so fast, but the memories will live forever. The VYLH legacy will definitely continue as we save more babies and the future generations.

    The new volunteers from Eastern Visayas were enlisted to the sixth and latest batch of VYLH-Philippines volunteers, Batch Kabilin. Kabilin is a Cebuano word for heritage or legacy. 

    Aside from the event being the first youth camp in Eastern Visayas, the camp also completed the 2016 regional youth camp series in the Visayas after the successful conduct of the Western and Central Visayas youth camps last April and August, respectively.# 

    ____________________
    Janelle Ruiz is a Registered Nurse and graduate of the University of San Carlos College of Nursing. She is a former President of the USC Nursing Student Organization (AY 2015-2016). Janelle became affiliated to the network as she participated in the 2013 Central Visayas Regional Youth Camp.

    Editor Ryan John Pascual

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    Insights of a “Gene” on the Implementation of K4Health

    by Rochelle Sarmiento (Kabilin, NCR-SL)

    Almost always in every Genetics-related lecture I have so far tried to comprehend, and, seemingly, fortunate to have understood, my professors would emphasize that the very traits being expressed by any organism are a product of the interplay of various genetic and environmental factors. In several instances, they would tell— one hand holding the microphone, a leg stancing forward, and eyes looking towards the sea of fascinated and uninterested students alike— that as an individual ages, the environment he is predisposed to would hugely play a role on what makes him basically him.

    Such notion is a widely accepted and acknowledged pillar of the concepts in Genetics. And when conceptually applied to matters of prime and social relevance, it would also pose an equally worth noting idea: that our perspectives on certain issues in the society may be influenced by the surroundings we find ourselves in and the people we have the opportunity to interact with.

    The Program

    Take as an example the conduct of the K4Health Community Youth Training Program. True to the meaning of K4, Kabataang Kabalikat ng Komunidad para sa Kalusugan, the primary aim of the said activity is to spark active participation among the youth towards sustainable improvement of the health of the people.

    Having made its pilot and second implementations at the Municipality of Nampicuan in Nueva Ecija last June 7 to 9 and August 27 to 28, respectively, the program has been able to produce 27 volunteer youth leaders (VYLs) who are trained to be on the forefront of raising awareness on the importance of folic acid supplementation and newborn screening in their community.

    Barangay Service Point Ofiicers (BSPO), GeneSoc facilitators, and youth volunteers of Nampicuan assemble for a photo opportunity after the special portion of the training program intended for BSPOs (Photo: GeneSoc)

    The Drive

    Interestingly, K4Health was the entry submitted by The UPLB Genetics Society in this year’s search for the Ten Accomplished Youth Organizations (TAYO) in the country. The submission was made out of mere optimism that if, by chance, GeneSoc would be given a distinction by the organizing body of TAYO awards through the K4Health, more formations and individuals would get to support its succeeding implementations in other underserved communities. Undeniably, K4Health have come far. It is now one of the 20 finalists out of 445 entries of the 14th TAYO Awards.

    Despite its ostensible achievement, as with any other fruitful endeavors, the program first came to its being from just a simple yet hopeful idea.

    A few months before the pilot implementation of K4Health, Nampicuan’s Municipal Health Officer and GeneSoc alumnus Dr. Ron Allan Quimado (BS BIO, '08) only wanted for the maternal and infant health and well-being in his community to advance. This led him to be working hand-in-hand with Mr. Ryan John Pascual (BS BIO, '10), his fellow GeneSoc alumnus and the national president of Volunteer Youth Leaders for Health Philippines from 2011 to 2012. These two passionate people, considered as kuyas in GeneSoc, asked some of the resident members if they would want to spearhead a three-day training program for VYLs. And although doubtful in terms of raising enough funds to carry out the program, the resident members during that time still agreed to proceed with the planning and preparation of K4Health, thinking that the necessary funds would make their way in time.

    True enough, with the support and mentorship of the Volunteer Youth Leaders for Health - Philippines, Department of Health Central Luzon Regional Office (DOH RO3), Newborn Screening Center Central Luzon (NSC-CL), Institute of Human Genetics of the National Institutes of Health in UP Manila, Municipality of Nampicuan in Nueva Ecija, UPLB Ugnayan ng Pahinungod, and some GeneSoc alumni, the resources needed to conduct the program were procured before the core group of residents went to Nampicuan in order to facilitate the training program.

    The Challenge

    It has already been six months after the core group started planning for K4Health. The preparations to the actual program facilitation, and to the next phases in store for K4Health, may entail huge amount of time among the members of the organization. These may even demand for nights of little to no sleep, for meals to be skipped, and for movies to be set aside.

    As K4Health Program tries to reach out to more communities while still monitoring and mentoring the youth in its previous implementation site, one member of the organization— a Gene— might feel, in some cases, as though he would not want any more to contribute what he can for the program. He might choose to turn a blind eye to the program itself, to think that it did not exist in the first place.

    But there will always be those dashes of reasons which will make him realize that he has a role to play. And this is something he cannot, and will not, be able to ignore.
    For once he recognizes that the program is not made only to be submitted as an entry for TAYO Awards; that it is not carried out for the organization to have at least one outreach activity every semester as required by the Office of Student Affairs; but rather believing that through the program, a person’s life may somehow be breathed easier, he— together with other passionate individuals advocating for this noble cause— will be left empowered to ceaselessly work for such undertaking.

    In the end, the idea behind K4Health speaks much of what the youth may collectively accomplish to lead improved lives in their communities. Doing this kind of endeavor is also one of the ways of embodying the meaning of Oblation, the iconic representation of the University of the Philippines, at which any Gene, as a Iskolar ng Bayan, finds his home. Truly, this effort resonates with any Iskolar ng Bayan’s selfless and ultimate commitment in serving the nation, as he does what he can while staying connectedly rooted with his countrymen to pave the way towards a better Philippines.#

    Originally published in GENEWS AY 16-17 No. 1
    The Official Publication of The UPLB Genetics Society

    Related: LGU, DOH Region III gear up Nampicuan youth for community health promotion
    _________________
    Rochelle B. Sarmiento is a BS Biology major in Genetics student at the University of the Philippines Los Banos. Her research interest includes the study of epigenetic mechanisms and quantitative inheritance governing the expression of certain traits in human populations. She is also fond of reading classic literatures and engaging in volunteer works. Rochelle is  the former Outreach Committee Head and the current Public Relations Officer of The UPLB Genetics Society. 

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    Written by Joan Barredo (K4, Zamboanga City) 

    VYLH-Philippines and the Colombian youth leaders joined by Colombia Joven Adviser Maria Francisca Cepeda,
    Ugnayan ng Pahinungod UP Manila Advocacy Program Coordinator Davis Tan and Institute of Human Genetics-
    NIH, UP Manila Director Dr. Mary Ann Chiong.


    Representatives of Volunteer Youth Leaders for Health (VYLH)- Philippines met and shared various youth advocacy activities and best practices of the network with youth leaders from Colombia last October 24, 2016 at the Chancellor's Board Room, Philippine General Hospital - University of the Philippines - Manila.

    The Colombian youth delegation all form part of the top winners recognized at the Fourth National Youth Volunteering Award. The awardees were selected from 190 nominees across Colombia and were chosen by a high-level committee composed of representatives from local, international, public and civil society organizations. 

    Members of the Colombian Deelgation. From L to R:
    Maritza Mera, Valentina Posada, Diana Montoya and
    Jose Fabian Gonzalez
    The national recognition came with an exposure trip to the Philippines aimed on facilitating the exchange of experiences between young people of both countries. The mission is part of the South-South Cooperation Initiative of “Strengthening Youth Organizations” between Colombia and the Philippines. 

    The Colombian delegation include Diana Paola Montoya of the Association of Scouts, Jose Fabian Gonzalez of Fundacion Juvenil Laguna Verde, Valentina Cardona Posada of Institution Educativa Eduardo Santos, and Maritza Fernanda Mera of Microsoft Student Partner – University of Cauca. According to the head of the delegation,  Ms. Maria Francisca Cepeda, "they come from different groups in Colombia and they were all recognized based from the remarkable and life-changing activities that they do for their communities." Cepeda is also the advisor of the Directorate of the Colombian National Youth System “Colombia Joven”.



    The three-hour meeting commenced with a welcome message from Dr. Mary Ann Chiong, Director of the Institute of Human Genetics - NIH, UP Manila, which was followed by the introduction of the participants from both groups and the youth organization presentations from UP Manila Ugnayan ng Panhinungod and VYLH-Philippines.

    UP Manila Ugnayan ng Pahinungod Advocacy Program Coordinator Davis Tan gave a preview of the Pahinungod’s history and its involvement in the university and the community, while an overview of VYLH-Philippines and its advocacies was presented by former National President Ryan John Pascual.


    The presentations paved way for a healthy exchange between VYLH representatives and the Colombian youth leaders, each disclosing the different advocacies and activities of the organization they represented. The youth conversation was facilitated by current VYLH – Philippines President Christian Emmanuel Enriquez.

    "We are humbled that VYLH activities are slowly being acknowledged globally, and that we are given the opportunity to share with you the advocacies of our organization. At the same time, we are also excited for possible collaborations with Colombian youth," said Enriquez.

    The bilateral meeting organized in coordination with the Embassy of Colombia in Korea and the Office of the Chancellor - UP Manila concluded with a sharing not only of the advocacies of the represented Colombian youth organizations but also with a sharing of gifts coming from Colombia and Filipino food for lunch.

    The meeting with VYLH-Philippines was the first meeting of the Colombian youth delegation in the Philippines. During their visit in the country, the Colombian delegation also conducted meetings with the National Youth Commission (NYC), Philippine National Commission for UNESCO (PHNatCom), and the Puerto Princesa City-based Palawan Conservation Corps.#

    The following is a video about the Colombian delegation's visit in the Philippines posted at the Colombia Joven Facebook page.



    _________________
    *Joan Mae Barredo is a former Coordinator for Advocacy and Development of the Social Awareness and Community Service Involvement (SACSI) Office of Ateneo de Zamboanga University (ADZU). She finished her BS Mass Communication degree in ADZU last 2011. She is the current Treasurer of VYLH-Philippines.

    Editor RPascual

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    Written by Zyra Nikka Indap

    PASAY CITY- It was a cloudy afternoon but it didn’t hinder to unite more than 1,800 health professionals, advocates and guests from different regions of the country to gather and celebrate the first two decades of Newborn Screening in the Philippines. 

    This year’s NBS convention with the theme, “Celebrating 20 Years of Newborn Screening towards Overall Screening and Management”, was held on October 25 and 26 at the Philippine International Convention Center (PICC), Pasay City. The event annually organized by the Newborn Screening Society of the Philippines Inc. (NSSPI) and Newborn Screening Reference Center (NSRC)-National Institute of Health (NIH), University of the Philippines – Manila aimed to update the participants through the talks by invited local and international experts.

    Day One (October 25)

    The President of NSSPI, Dr. Ephraim Neal Orteza cordially welcomed the delegates. Followed by special messages delivered by Dr. Eva Maria Cutiongco de la Paz, Vice-Chancellor for Research of UP Manila and Executive Director of National Institutes of Health and Undersecretary Florita Villar delivered the inspirational message on behalf of Secretary Judy Taguiwalo. Usec. Villar emphasized health as one of the rights of the children to be protected by which it concerns the department. Dr. Lyndon Lee Suy, Director of Disease Prevention and Control Bureau of the Department of Health (DOH), previewed DOH’s comprehensive range programs for newborns through his keynote address on behalf on Department of Health Secretary Dr. Paulyn Jean Rosell-Ubial. 

    The first plenary session was led by Dr. Carmencita Padilla, Chancellor of UP Manila and pillar of the implementation of NBS in the country. She vividly discussed the challenges and success in the past 20 years and presented a preview into the nest 20 years. Dr. Padilla highlighted the milestones of NBS implementation including development in neighboring Asian countries. “I can proudly say that this is a successful program because of volunteerism, whether resulting from professional feeling of national responsibility or a simple desire to do good” said Dr. Padilla. She also acknowledged the contribution of each individual’s volunteerism in reaching the goals of the NBS program and encouraged everyone to advocate for Expanded Newborn Screening (ENBS). The launch of ENBS last December 2014 has allowed the testing of 22 additional disorders aside from the basic panel of six disorders namely Congenital Hypothyroidism (CH), Congenital Adrenal Hyperplasia (CAH), Phenylketonuria (PKU), G6PD Deficiency (G6PDD), Galactosemia, and Maple Syrup Urine Disease (MSUD).

    Dr. Maria Melanie Liberty Alcausin, Director of Newborn Screening Reference Center brought new hopes in implementing the program as she discussed plans for new newborn screening centers (NSCs) and an update on confirmatory centers. She further gave details on the coverage of Expanded Newborn Screening program (ENBS). On the other hand, Dr. Reynaldo de Castro Jr. gave updates on thalessemias beyond the NBS program. He believes that screening leads to prevention of these congenital hemolytic disorders. 


    The last plenary session for the first day of the conference centered on the first two years of NBS Continuity Clinics (NSCC). NSCCs are essential in the long-term management and follow-up of patients with genetic disorders diagnosed through NBS. Dr. Angelica Tomas, the Head of Continuity Clinics presented cases and statistics regarding recalled confirmed cases in the continuity clinics while Region 6 NBS Program Manager Dr. Renilyn Reyes shared the approaches in advancing quality services in Western Visayas through NSCC initiatives. Reyes elaborated programs of the continuity clinic such as collaboration and partnership with NBS stakeholders and outreach as part of their critical strategies and methods to provide quality services. Moreover, Dr. Nancy Honor, follow-up head of Continuity Clinic in Region 8 shared the best practices recognizing the needs of the patients in their region. Challenges are also face by continuity clinics was discussed by Dr. Genelynne J. Beley, Follow-up head of Region 11 Continuity Clinic.  Dr. Beley pointed out several factors such as difficulty of compliance of required tests in some cases, transportation, and communication limiting time of recall of affected patients.

    Day Two (October 26)

    The second day of the convention started with a talk on the importance of its effectiveness of proper and timely collection and transport of the NBS specimens for proper diagnosis and treatment. NSC Mindanao Unit Head Dr. Conchita Abarquez discussed the factors which hinder effective collection, and ways to help the coordinators to manage timeliness of the NBS findings. Afterwards, NSC Visayas Unit Head Dr. J Edgar Winston Posecion presented maternal conditions and how it will be managed to minimize false positive results in ENBS. 

    The next plenary session sought to talk about cases and management for different congenital disorders detected through the NBS program. Dr. Maria Beatriz Gepte discussed about the case scenarios of encountered patients with G6PD deficiency while Dr Meow-Keong Thong, a Malaysian clinical geneticist shared his expertise in managing patients with Fatty acid oxidation disorders (FAOD) which are rarely reported in the Asian population. He conveyed a comparison overview of the programs in Philippine and Malaysian setting. The third speaker, Dr. Mary Anne Chiong, the Director of the Institute of Human Genetics-NIH, UP Manila, cited some remarkable cases of Organic Acid Disorders detected through ENBS. Dr. Sylvia Estrada concluded the session as she discussed disorders of sex differentiation and approaches on recognizing ambiguous denitalia. She pointed that Congenital Adrenal Hyperplasia (CAH) is the most common cause of ambiguous genitalia.

    Other screening procedures such as newborn hearing screening and pulse oximetry were also discussed in this year’s convention. Newborn Hearing Screening Reference Center (NHSRC) director Dr. Charlotte Chiong discussed newborn hearing screening, RA 9709 or the Universal Newborn Hearing Screening and Intervention Act of 2009 and the services offered by NHSRC. Hearing screening aims to provide early diagnosis and immediate intervention services for newborns with congenital hearing loss. Like NBS, it is included in PhilHealth’s Newborn Care Package. 

    On the other hand, screening congenital heart disease through Pulse Oximetry testing among infants was presented by Dr. Jose Jonas del Rosario, an interventional pediatric cardiologist and Ms. Annamarie Saarinen, founder and chairperson of the US-based colation, 1in100. Dr. del Rosario emphasized the newborn with critical congenital heart disease are in greater risk of disability of death if not diagnosed soon after birth. Ms. Saarinen shared her experiences as a mother of a child with CCHD. She also discussed the use of a prototype with free mobile phone application with pulse oximeter attachment. 

    After lunch, two separate symposiums are held to cater certain topics. Symposium A consisted of talks on “Other Screening Criteria for Retinopathy of Prematurity (ROP)” by Dr. Milagros Arroyo and “Screening for Developmental Dysplasia of the Hip” by Dr. Juanito Javier. Meanwhile, Symposium B centered on implementation strategies, stories, and even the struggles of NBS coordinators in the different parts of the country. The session included the following talks: Enhancing Newborn Screening Program in the Cordillera Administrative Region through Annual Program Implementation Review by former NSC-Central Luzon Unit Head Dr. Florencio Dizon; Rebuilding Newborn Screening in Eastern Visayas by Region 8 NBS Program Manager Dr. Lilibeth Andrade; “ENBS Implementation in a LGU Setting by Dr. Rosalinda Tan of Manila Health Department; and NBS Best Practices in Lamao Health Center in Bataan by Ms. Charry Villanueva.

    Following the parallel sessions was a plenary talk about rare disorders which touched the hearts of every delegate. Philippine Society of Orphan Disorders (PSOD) President Mrs. Cynthia Madaraog shared her experience as a mom of rare disorder patient, as well as some stories of patients with orphan disorders. Orphan disorders are rare genetic conditions which has a prevalence of 1 in 20,000 or less. Early this year, the Rare Diseases Act of the Philippines (RA 10747) was enacted into law.

    As closing remarks, Dr. Padilla led the “NBS at 20” book launch. The book contains the turning points of the NBS implementation in the Philippines, as well as different stories that would inspire every individual to strengthen their NBS advocacy.

    Four children saved through newborn screening such as Daniella (CH), Danica (CAH), Dave (CAH) and Janelle (CAH) were the final special guests in this year’s convention. Now an engineering student, Janelle is the seven year old little girl in the well-circulated NBS poster standing alongside the 14-year old JR. Janelle and the rest of the saved children are the living testimonies of the program’s success and the continuous effort of their families, NBS coordinators and advocates. Their stories together with other patients were included in an audio-visual presentation that was also launched during the event. 

    The presence of the saved children further strengthened the participants’ commitment as NBS practitioners and advocates to hope for more progressive years and the further improvement and success of the Philippine NBS program. Through our collective effort, we can save more babies from mental retardation, and death through newborn screening. As Dr. Padilla mentioned, “we have a pressing responsibility to protect the health and well-being of the next generation of Filipino newborns, their families, and our society in general. We must guard this responsibility carefully and never underestimate its importance!”#

    _____________________
    Zyra Nikka Indap is a Bachelor of Secondary Education (BSEd) major in Social Studies graduate of Polytechnic University of the Philippines (PUP) - Manila. She is also a former Chief Magistrate of the PUP Social Studies Guild. Zyra is now a registered professional teacher after passing the September 2016 Licensure Examinations for Teachers (LET).

    Editor Ryan John Pascual

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    Written by Ryan John Pascual

    PASAY CITY -  Last October 24-25, the Newborn Screening Society of the Philippines (NSSP) and the Newborn Screening Reference Center (NSRC-NIH, UPM) gathered 1800 professionals, practitioners, guests, and newborn screening advocates for the 14th National Newborn Screening (NBS) Convention at the Philippine International Convention Center in Pasay City. The convention was even made more special with the celebration of the first two decades of newborn screening in the Philippines as reflected on its theme “Celebrating 20 years of Newborn Screening towards Overall Screening and Management”.

    During the convention, local and international speakers shared implementation strategies, developments and recent technologies in newborn screening. Among the plenary speakers was Philippine Society for Orphan Disorders (PSOD) President Mrs. Cynthia Magdaraog who encouraged everyone in attendance not only to advocate for newborn screening but also for rare diseases.

    At present, three out of the six conditions in the 6-test panel newborn screening that fit to the current accepted definition of a rare disease in the Philippines or a condition with a prevalence of 1 in 20,000 or lower. These include Galactosemia, Phenylketonuria and Maple Syrup Urine Disease. With the recent introduction of expanded newborn screening, it is now possible to detect more than 20 additional rare disorders, as well as provide timely and appropriate treatment for these conditions.


    In her talk “Hope for Persons with Rare Disease”, Mrs. Magdaraog cited global and local definitions, common characteristics of rare diseases, and the PSOD registry. As of June 2016, the PSOD registry is composed of 272 patient families, 64 rare disorders and 7 patient support groups.

    She also shared a 13-minute video presentation of three rare disease cases– Gauche disease patient, Pauline; Hunter’s syndrome patients, the Parco Brothers; and Blue Rubber Bleb Nevus syndrome patient, Ziv. Mrs. Magdaraog noted that the “cases were chosen because of the parents’ determination, tenacity and deep yearning to fulfill the dreams of their children.”

    According to the PSOD President, there is a public-private collaboration of four pillars that has made the transformation of lives possible for rare disease patients. In its early years, the first three pillars namely the Institute of Human Genetics of the National Institutes of Health – UP Manila (IHG-NIH, UPM), the PSOD, and the private sector which includes NGOs, pharmaceutical companies and donors were the most active in supporting rare disease patients.

    She recounted that rare disease support in the country started with the doctors at the Institute of Human Genetics (IHG-NIH, UP Manila) looking for treatment for diagnosed patients in 1991. In 2006, the PSOD was founded through the efforts of then IHG director Dr. Carmencita Padilla, IHG physicians, rare disease patient families and advocates in order to sustain the efforts initiated at the IHG.

    She also noted that the support of the government, the fourth pillar, eventually materialized. In 2011 and 2013, the Department of Health (DOH) provided grants through the Rare Disease Medical Access Program. Furthermore, the recent enactment of the Rare Diseases Act of the Philippines (RA 10747) on March 3, 2016 will institutionalize a sustainable system of comprehensive care through the involvement of the government through the DOH, PhilHealth, PCSO and other allied government agencies.

    Mrs. Magdaraog also spoke on her personal struggles as a mother of a rare disease patient, Dickoy. She mentioned that they were once told that her son with Pompe disease would only live until his 30th year. Now, her son is an Industrial Design graduate and an accomplished 39-year old entrepreneur despite only being able to move his wrists.

    From her personal experiences and the recent developments in rare disease support in the country, Mrs. Magdaraog noted that she believes that there is enough reason for persons with rare disease to hope for a better quality of life.#

    The following is a video of the plenary talk on rare diseases posted at the VYLH-Philippines Facebook Page.


    ___________________
    Ryan Pascual (@rypascual) is a BS Biology major in Plant Biology graduate from the University of the Philippines Los Baños (2010) and an MS student at UP Diliman. He is a proud member of The UPLB Genetics Society where he served as Education Committee Head (2008-09) and Folic Acid Campaign Committee Head (2009-10). He is also the first National President of VYLH-Philippines (2011-12). 





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    MANILA – Last October 15, 2016, UNILAB Foundation together with Volunteer Youth Leaders for Health (VYLH)-Philippines hosted the National Capital Region-leg of ISTORYA: Stories of Youth in Action at the National Institutes of Health Conference Room, UP Manila. The event open to youth age 18-30 years old was participated by interested students and representatives of organizations from UP Manila and Pamantasan ng Lungsod ng Maynila (PLM). Representatives of various College-Y Clubs also attended the event as part of the YMCA-Manila delegation.

    As envisioned by the UNILAB Foundation, iStorya is a platform and youth-led conversation where Filipino youth leaders can come together and exchange innovative ideas on how to solve different public health issue in their community. 

    The said activity also aims to increase participation to Ideas Positive, a nationwide youth program of the same foundation that enables youth leaders to implement their ideas in their selected community. In the contest, teams with the best ideas will undergo mentoring at the Ideas Positive Boot Camp and will receive up to 100,000 pesos seed money for their projects. 

    For the event, VYLH-Philippines invited Mu Sigma Phi Fraternity to give a talk on one of their on-going projects. The organization which is known to be the first fraternity in UP College of Medicine and the Asian region is a Gawad Chanselor Hall of Famer and 2016 Most Outstanding Student Organization in UP Manila. In his talk, Angelo Rafael Cruz presented the 10-year program MUbility which included a series of activities directed to the health and wellness of differently-abled Filipinos. He also shared the process of conceiving the project as one of the service arms of the fraternity.

    The Mu Sigma Phi session was followed with a presentation on VYLH-Philippines and its advocacies by Immediate Past National President Ryan Pascual. Pascual shared the inception of VYLH-Philippines and its current progress. He also gave an overview of the K4Health community youth training program launched by the network in partnership with The UPLB Genetics Society in Nampicuan, Nueva Ecija. Recently, VYLH-Philippines was recognized by YouthLeadGlobal as a top model youth leadership program, while the K4Health program qualified to the National Finals of the 14th search for the Ten Accomplished Youth Organization or TAYO Awards which will culminate in 2017. 

    Aside from the talks from youth organizations, iStorya also featured a youth conversation where participants had the opportunity to exchange concerns and positive ideas on solving existing health issues. 

    Also included in the program is a brief introduction of Ideas Positive by Ideas Positive Program Manager Dr. Christian Gomez, and a workshop on making the Ideas Positive proposal. During the workshop, participants were encouraged to write down their positive ideas addressing a specific health concern in their target community. It is expected that the output of the participants during the workshop can be further refined and submitted as an entry to the competition. 

    After the workshop, UP College of Medicine student and Ideas Positive alumnus Chelsea Fandinola shared their team’s experience as an Ideas Positive finalist. Fandinola was a member of Team Sinag which pioneered “Oplan Tacayan”, a public health intervention program designed to eliminate filariasis for a community of Panay Bukidnon Indigenous people in Barangay Tacayan, Tapaz, Capiz. Team Sinag won the third place of the 2016 edition of the contest. The team was composed of UP Manila Medicine and UP Visayas undergraduate students.


    The half-day program concluded with the closing remarks given by Ms. Aster Lynn Sur, the National Secretariat of VYLH-Philippines. Ms. Sur noted that the desire to bring change, especially for heath, is the special reason uniting the event’s organizers and participants. 

    In addition to iStorya-NCR, other Ideas Positive promotional events were held in Manila. On the same day of iStorya youth forum, former Ideas Positive Alumni Community President Roy Dahildahil shared the mission of building a healthier Philippines through Ideas Positive in a gathering of Rotaractors in Paco, Manila. This was followed by the promotional talk by Dr. Christian Gomez at Perspectives 2016, the UP Manila Mental Health Forum. 

    Ideas Positive also collaborated with other youth organizations and their alumni community in holding iStorya sessions in Pangasinan, Zambales, Tarlac, Palawan, Camarines Norte, Cebu, Capiz, Leyte, Cotabato City, Zamboanga City, and Basilan. #RPascual 

    _________________
    VYLH-Philippines would like to extend its sincere gratitude to UNILAB Foundation, particularly Ideas Positive, for the opportunity to host Istorya-NCR. The network would also like to thank the UP Manila Institute of Human Genetics and the National Institutes of Health for approving our request to use the NIH conference rooms. 

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    To strengthen volunteerism and expand the network of youth leaders who help increase public awareness on newborn screening (NBS) and other health issues, the Department of Health–Regional Office (DOH-RO) 3, in collaboration with the Newborn Screening Center–Central Luzon (NSC-CL), organized a camp for the Volunteer Youth Leaders for Health (VYLH) titled “Kabilin: Revolutionizing Health Promotion through Youth Participation” at the Stotsenberg Hotel in Clark Freeport Zone, Pampanga, on October 13-14, 2016.

    Student leaders from different universities and members of the Nurse Deployment Program (NDP) in Central Luzon were invited to participate and were introduced to VYLH and its advocacies. Afterward, the participants worked in groups for leadership training and teambuilding. During the socials night, cultural presentations were performed by the different groups. 

    On the second day, an election of officers was held. Provincial VYLH coordinators and assistant coordinators were elected as follows: Al Francis Yapes for Aurora, Jenalyn Baluyot for Bataan, Mark Anthony Tapispisan for Bulacan, Ella Lavina Domingo for Nueva Ecija, Edison Obsena for Olongapo City, Aileen Magcalas for Pampanga, and Elvin Plantilla for Tarlac. 

    Later, Madeline Gayle Tayag, DOH-RO 3 NBS Coordinator, presented the current health situation of the country, DOH programs, and updates on NBS in the region. Dr. Marie Adrianne Salunga, NSC-CL Unit Head, discussed the Expanded Newborn Screening program.

    As culminating activity, the participants devised plans to promote the advocacies of the organization. The plans were presented to a panel of reactors from NSC-CL and DOH-RO 3 for feedbacks and recommendations. The program ended with a symbolic imprinting of hand marks to indicate their full
    commitment to the VYLH network. NDelaCruz

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    On our 7th year, Volunteer Youth Leaders for Health (VYLH)-Philippines has gained new members and reached new milestones as it continued to advance the mission of empowering the Filipino youth for health. This year, the network made major strides in volunteer training, social media utilization, and fostering exchange and partnerships.

    Training new volunteers

    As part of an active effort of involving more youth to the advocacy, VYLH-Philippines introduced the network to youth leaders through local orientation sessions and youth camps. These volunteer training and formation activities were spearheaded by the four VYLH-Philippines clusters as a testament to unwavering commitment of the network to its mission of expanding its membership throughout the country.

    Last March 2016, VYLH North and Central Luzon held an orientation on VYLH and its advocacies which was attended by youth leaders and department heads from six universities in Pangasinan. On the other hand, a two-day advocacy and leadership orientation was organized last November by VYLH Mindanao for the officers and members of Pag-asa Youth Association of the Philippines (PYAP)-Davao City Federation.

    In addition to youth orientations, youth camps remain to be the major avenue of volunteer recruitment in the network. This year, VYLH was able to organize six youth camps. Briefly, a majority of these camps were regional camps (five out of six), with the most held in the Visayas (three out of six). Regional Youth Camps were held in Western Visayas in April; Central Visayas in August; Eastern Visayas in September; and, Central Luzon and CARAGA in October. Meanwhile, a cluster youth camp was organized by VYLH-Philippines NCR-South Luzon last October and this was participated by youth leaders from NCR, CaLaBaRZon and Bicol Region.

    New milestones were achieved by the volunteers in these youth camps with the first regional camp organized in Eastern Visayas, and the successful conduct of youth camps in each of the regions of the Visayas Cluster – the first Cluster to complete a regional series in the network. On the other hand, this is the first time for NCR-South Luzon to hold a cluster youth camp after only having youth orientations in the past years.

    In Mindanao, CARAGA volunteer youth leaders (VYLs) remain to be leaders and innovators with the first regional congress of CARAGA VYLs and third regional youth camp for the region. The congress gathered CARAGA volunteers from various VYLH batches since 2009.

    This year, VYLH-Philippines was also able to pilot its community youth training program – K4Health, a program aimed to organize and mobilize community youth members towards birth defects prevention and newborn screening promotion. The program title, K4Health or Kabataan for Health strongly underscores the role of the youth in nation building and their mobilization towards health promotion. The four “Ks” or “K4” which stand for “Kabataang Kabalikat ng Komunidad para sa Kalusugan” highlights the need for the youth to effect change and be partners of change in their community. The K4Health program was officially launched last June 7-9, 2016 at Nampicuan, Nueva Ecija through the collaboration of The UPLB Genetics Society (GeneSoc), VYLH-Philippines and the local government of Nampicuan, Nueva Ecija represented by its Municipal Health Officer Dr. Ron Allan Quimado, MD, MPH.

    Overall, more than 140 new volunteer youth leaders were affiliated to the network through these youth camps. The new volunteers were also enlisted to the sixth and latest batch of VYLH-Philippines volunteers, Batch Kabilin. Kabilin is the Cebuano word for heritage or legacy.

    VYLH-Philippines extends its sincere gratitude to the various Department of Health Regional Offices, and partner Newborn Screening Centers (NSCs) as they have always been instrumental to the conduct of these activities. These include DOH Region I, III, VI, VII, VIII, NCR and CARAGA, as well as Newborn Screening Center Central Luzon, NIH, Southern Luzon, Visayas and Mindanao.

    Utilizing social media in promoting birth defects prevention and care

    2016 also marked VYLH-led initiatives on promoting birth defects prevention and care through social media. There were held on top of the existing social media activities held in observance of the National Rare Disease Week and the National Newborn Screening Week.

    In 2015, VYLH-Philippines and the Institute of Human Genetics (IHG)-NIH, UP Manila accepted the invitation from the March of Dimes (MOD) and the International Clearinghouse for Birth Defects Surveillance and Research (ICBDSR) to join and be an international partner organization for the second year of World Birth Defects Day or #WorldBDday. Held every 3rd day of March, World Birth Defects Day (WorldBDday) is a global campaign to raise awareness on birth defects and expand birth defects surveillance, prevention, care, and research worldwide. The event was launched on March 3, 2015 by a consortium of twelve international organizations.

    With this, the WorldBDday Philippines Secretariat was convened through the collaboration of IHG, VYLH, the Newborn Screening Reference Center (NSRC) and the various NSCs in the country. Under the auspices of UP Manila Chancellor Dr. Carmencita Padilla, partner organizations were gathered at the Chancellor’s Board Room, UPM-Philippine General Hospital. A website (worldbddayph.weebly.com) and social media pages were also launched by VYLH-Philippines in coordination with the members of the national secretariat. Overall, a total of 40 organizations were able to participate to the #WorldBDday campaign: 4 government agencies, 3 professional societies, 5 civil society and patient support groups, 5 media partners and 23 student organizations.

    Included among the activities done by partners for #WorldBDday were posting of website announcements, organizing photo booths and fansign campaigns, and joining the social media day. VYLH-Philippines also promoted the campaign in various activities leading to WorldBDday. With the release of the #WorldBDday 2016 report, the Philippines was recognized with a “Twitting Award” for being one of the countries with the highest number of tweets (12.4% of the #WorldBDday tweets from March 3-4, 2016). The Philippines was the only country recognized in the Asia-Australia-Africa group of the campaign. This recognition is truly remarkable since WorldBDday2016 was the first formal observance of the event in the Philippines.

    Aside from WorldBDday, another social media event spearheaded by the network was #FolicAcidPH or the first national social media day for folic acid awareness. #FolicAcidPH was held in observance of National Nutrition Month, National Disability Prevention and Rehabilitation Week, and the network’s seventh founding anniversary last July 18. The social media campaign which aims to increase public awareness on folic acid, its sources, and its role in good health and the prevention of birth defects, specifically neural tube defects, was able to gain the support and active participation of 49 partner organizations: 45 university-based organizations, 3 national student alliances/organizations and one non-government organization.

    In addition to social media participation, “on the ground” activities such as school-based and room-to-room campaigns were also conducted by participating organizations. One of the participating groups, the VYLH-Philippines Nampicuan Chapter, took part through #FolicAcidPH fansigns with local leaders and separate advocacy discussions to senior high school students and parents. The group also joined the Nutrition Month Celebration of the Municipality of Nampicuan where volunteers had an advocacy display on folic acid at the event. They also gave a lecture on the importance of folic acid supplementation.

    In Iloilo, the Asian Medical Students' Association West Visayas State University (AMSA West Visayas State University WVSU), in cooperation with VYLH Philippines-Iloilo Chapter, held a forum entitled “#FolicAcidPH and the Youth” last July 30. The forum aimed to promote folic acid deficiency prevention and awareness through the initiative and commitment of the youth which was actively participated by representatives from the WVSU College of Communication (WVSU-COC).

    Another social media event held during the anniversary week of the network was the preconception health tweetchat organized in partnership with HealthxPh. The TweetChat session which focused on Preconception Health (PreCon) for Birth Defects and Disability Prevention was held last July 23, 2016. It explored the possible reasons that preconception health consultation and awareness is not popular and discussed the reforms or potential activities that can be done to improve awareness. The utilization of social media in improving preconception health awareness was also looked at.

    Intensifying community involvement

    Intensifying involvement has been one of efficient strategies of the network on broadening its reach with community partners. One of the regular activities of the network since 2012 is its involvement to the observance of National Pregnant Women’s Day or Buntis Day organized by the Philippine Obstetrical and Gynecological Society (POGS). In 2016, VYLs joined POGS in three locations: Manila, Iloilo and Davao.

    In addition to the promotional activities conducted by VYLH-Philippines volunteers in their schools and communities, various mass advocacy campaigns were also organized by VYLs, making them more immersed on health promotion work. VYLs took the opportunity of conducting advocacy talks and distributing informational materials as ride-on activities at various activities in their schools and communities.

    VYLH Dumaguete volunteers were able to conduct such activities at the Asian College – Dumaguete and the Silliman University Medical Technology Department. Similar initiatives also materialized at the West Visayas State University – Calinog Campus and Central Philippine University Pharmacy Department in Iloilo.

    In Region VIII, VYLs participated in the youth formation training of SADE Leyte Chapter, and the Youth Leadership Summit of the 87th Infantry Battalion in Hinabangan, Samar. Themed “Ang kabataan na may malawak na kaalaman, disipilina at pagmamalasakit sa kapwa at lipunan ay tunay na pag-asa ng bayan”, the latter was attended by 105 youth participants aged 15 to 21 years old. VYLs also participated in the 3rd Pambujan Youth Congress in Northern Samar. Region VIII VYLs also held a series of ride-on advocacy talks during the Youth Orientation and Consultation activity in seven remote barangays of Pambujan.

    In NCR, VYLH-Philippines NCR-South Luzon Cluster Coordinator Rufus Adducul represented the network through speaking engagements at the Spectrum NGO Forum organized by the Rotaract – UST Faculty of Engineering, and the Volunteer Fair hosted by the Philippine Normal University (PNU) Y-Club. The PNU Volunteer Fair was attended by more than a hundred participants coming from various College-Y clubs in Manila and nearby areas.

    The cluster was also invited to the Stakeholder’s forum organized by the National Nutrition Council – NCR. With the theme “Setting the Child’s Future during the First 1000 Days”, more than 300 stakeholders from different LGUs, agencies, and sectors in Metro Manila attended the forum held at the Heritage Hotel, Pasay City. Former NCR-South Luzon Adviser Dr. April Grace Dion-Berboso discussed "Folic Acid and Pregnancy” during the event. VYLH-Philippines was invited to the forum through the #FolicAcidPH campaign spearheaded by the network.

    On the other hand, volunteers from the VYLH network of organizations in Los Banos, Laguna conducted an outreach program and seminar on Maternal Health and VYLH-Philippines advocacies at Brgy. San Antonio, Los Banos, Laguna. The local network of volunteers also participated in holding Project #TROPA (Teens are Responsible over Pregnancy Advocacy) spearheaded by UP Manila Masters in Public Health (MPH) students and the Municipal Health Office of Los Banos. The event catered to Grade 7 students of Los Banos National High School.

    VYLH-Philippines also sent representatives to the Science Legislative Forum on Folic Acid organized by the National Academy of Science and Technology last June 28, 2016. In the said forum, NAST gathered stakeholders from the health and nutrition sector, representatives from the legislative body and other concerned government agencies, the academe, the private sector, and the pharmaceutical industry.

    Aside from presenting evidence on the impact and safety of folic acid intake, the national and global burden of neural tube defects, providing an overview of the proposed legislation on folic acid supplementation and fortification and discussing the role of government agencies, the academe, and the private sector were the objectives of the said forum. True enough, the proposed “Folic Acid Act” or House Bill 3341 was filed into Congress within a month after the forum by Taguig Representative Pia Cayetano.

    For the month of October, VYLH-Philippines once again joined the observance of National Newborn Screening Week. VYLs led the #NBSat20 social media campaign which was participated not only by VYLs but also by five partner organizations. The network also supported the Thunderclap organized by the Newborn Screening Reference Center.

    In the Cordilleras, VYLs participated in the DOH-CAR Poster and Slogan Making Competition held at the DOH-CAR Regional Office in Baguio City. Meanwhile, VYLH-Philippines Visayas volunteers joined in the second Newborn Screening Fun Run organized by the DOH-Central Visayas Regional Office in Cebu. The fun run is one of the major activities hosted by the regional office in observance of National Newborn Screening Week.

    Furthermore, representatives of the network also attended the Philippine Healthcare and Social Media Summit last April; 6thh Asia-Pacific Conference on Public Health and 1st ASEAN Health Promotion Conference in Bangkok, Thailand last August; the 14th National Newborn Screening Convention last October; and the First National Summit on Prematurity and Low Birth Weight organized by the Department of Health last November.

    Celebrating the Gift of Life

    In addition to health promotion activities, VYLH-Philippines also engages on joining the activities organized by its partners for children with genetic and rare conditions. The network believes that through such activities, volunteers can deepen their interest to the advocacy by interacting with some of its beneficiaries.

    Last February, VYLH-Philippines and partner UP Manila organizations participated in the “Fly and Sail with Rare” activity organized by the Philippine Society for Orphan Disorders that was held last February 20, 2016 at the Sangley Point Naval Base in Cavite City. The annual worry-free day for the parents and guardians of children with rare disease is part of the patient and family welfare program of PSOD. Thirty-one children beneficiaries were given by the Philippine Navy Naval Air Group a chance to ride a navy islander aircraft and patrol boat. VYLs, volunteers, and partner organizations entertained the kids and their families through various fun games, arts and crafts activities.

    Volunteer youth leaders also participated in the Annual Reunion of Saved Babies (ROSB) organized by the Newborn Screening Centers and DOH Regional Offices. VYLs across the country joined the ROSB in Bohol, Iloilo, Bacolod, Davao, Cebu, National Capital Region, and Tacloban.

    Last December, VYLs shared the joy of Christmas with children and families of the PSOD in their Christmas Party held in Makati and Cebu. In Makati, the VYLH-affiliated organization UP Pre-Medical Honor Society was tapped by PSOD as event partner. UP PMHS facilitated fun games and activities for the kids, as well as provided toys and gift packs to the participants. In addition to this, VYLs from Manila and partner UP Manila organizations spent a day of fun and cheers at the Philippine general Hospital for the “I am IHG (I am In for Hope-Giving)” event organized for the patients of the UPM-PGH Pediatric Genetics Clinic.

    Fostering exchange and partnership   

    Fostering exchange and partnerships has also become the highlight of 2016 for VYLH-Philippines. In fact, two events held on October 2016 have provided new local and international partners for the network.

    Last October 15, 2016, UNILAB Foundation, together with Volunteer Youth Leaders for Health (VYLH)-Philippines, hosted the National Capital Region-leg of ISTORYA: Stories of Youth in Action at the National Institutes of Health Conference Room, UP Manila. The event open to youth age 18-30 years old was participated by students and representatives of organizations from UP Manila and Pamantasan ng Lungsod ng Maynila (PLM). Representatives of various College-Y Clubs also attended the event as part of the YMCA-Manila delegation.

    As envisioned by the UNILAB Foundation, iStorya is a platform and youth-led conversation where Filipino youth leaders can come together and exchange innovative ideas on how to solve different public health issue in their community.

    On the same date, VYLH-Philippines volunteer Melorens Dumas (Batch E4, Cebu) was invited to give an inspirational talk on the challenge of building a #HealthierPH. Dumas shared the network’s advocacies to the participants of Istorya in Cebu.

    On the other hand, representatives of Volunteer Youth Leaders for Health (VYLH)- Philippines met and shared various youth advocacy activities and best practices of the network with youth leaders from Colombia last October 24, 2016 at the Chancellor's Board Room, Philippine General Hospital - University of the Philippines - Manila.

    The Colombian youth delegation all form part of the top winners recognized at the Fourth National Youth Volunteering Award. The awardees were selected from 190 nominees across Colombia and were chosen by a high-level committee composed of representatives from local, international, public and civil society organizations. The national recognition came with an exposure trip to the Philippines aimed on facilitating the exchange of experiences between young people of both countries. The mission is part of the South-South Cooperation Initiative of “Strengthening Youth Organizations” between Colombia and the Philippines. 

    Reaching new heights

    Aside from meeting and making ties with new partners, 2016 was also a year of recognition for the network. Among the accolades received by the network was the distinction to be one of the “Top Model Youth Leadership Programs of 2016” by the global youth leadership program search, YouthLeadGlobal. YouthLeadGlobal is a collaborative engagement of Leadership, Management & Governance (LMG) Project, United States Agency for International Development (USAID), International Youth Alliance for Family Planning and Youth Health and Rights Coalition.

    In Region VI (Western Visayas), the work of the network and VYLs in the region was recognized "for their invaluable support and assistance towards achieving better child health outcomes in Western Visayas particularly in the advocacy and promotion of the Newborn Screening Program" during the Regional Recognition of Partners and Stakeholder organized by the Department of Health – Regional Office VI last November 29, 2016.

    In addition to the recognitions given to the network, the past year had seen productive outputs that entered national level contests namely Unilab Foundation’s Ideas Positive and the Search for Ten Accomplished Youth Organizations (TAYO).

    Now on its seventh year, Ideas Positive, a nationwide youth grant competition and youth formation that enables youth leaders to implement their ideas in their selected community, had received 159 entries from various youth teams across the country. From these, 50 innovative and promising projects qualified to the regional live screening. Two of the projects came from VYLH-Philippines teams “Youth for Preemies” and “Proactive Kabilin”. Both came from VYLH-Philippines NCR-South Luzon Cluster. Team Youth for Preemies, composing mainly of Philippine Association of Nutrition (PAN)-Alpha Epsilon Chapter members and BS Nutrition students from the Polytechnic University of the Philippines (PUP)-Manila, proposed a pilot project on the surveillance of premature birth in the City of San Juan, and the conduct of an awareness campaign for the prevention of preterm births. On the other hand, Team Proactive Kabilin had members from VYLH NCR-SL camp delegates of Los Banos-based organizations – PAN Alpha Omega, The UPLB Genetics Society, UP Community Broadcasters Society, and Rotaract Los Baños. The group focused on the conduct of a community-based preconception health promotion and education program in Barangay Mayondon, Los Banos, Laguna.

    In the contest, teams with the best ideas will undergo mentoring at the Ideas Positive Boot Camp and receive up to 100,000 pesos seed money for their projects. Last December, one of the teams, Team Proactive Kabilin, was announced as one of the 15 national finalists of the competition.

    Meanwhile, another feat at the national level was made by the network as the collaborative project implemented by the network, the K4Health Community Youth Training Program was recognized through the entry submitted by The UPLB Genetics Society, one of the pioneer member organizations of VYLH-Philippines to the TAYO Awards. The TAYO Awards or the search for the Ten Accomplished Youth Organizations aims to recognize, reward, and encourage youth organizations all over the country with programs and projects that help their communities. TAYO hopes to inspire more young people to find innovative solutions and to challenge status quo through the organizations to which they belong.

    The K4Health Project was selected as one of the top twenty national finalists and one of the four finalists in the “Health, Nutrition and Well-being” category. Last February 2017, GeneSoc President Merc Emil Matienzo presented the project to the national judging panel of the competition.

    Moving Forward 

    This 2017, VYLH-Philippines hopes to sustain its gains and charter new paths.

    Volunteer training and formation remains a priority for the network. This can be done and supported by strengthening the network’s partnership with the DOH Regional Offices and Newborn Screening Centers, as well as forging new ties with local government units, other national government agencies, professional societies and other non-government organizations.

    VYLH-Philippines also welcomes the addition of the newest Newborn Screening Center, NSC-Northern Luzon. The center which is based at Batac, Ilocos Norte will serve the screening needs of Region I and II. On the other hand, newborn screening for Region III and CAR will remain covered by NSC-Central Luzon.

    It is also hoped that a National Leadership Congress will be held within the year or the following year. At present, preparations and preliminary event coordination are still underway. VYLH-Philippines last held this event in 2013 in conjunction with the country’s hosting of the International Conference for Birth Defects and Disabilities in the Developing World (ICBDDD) in Mactan, Cebu. Holding the Congress will be avenue on reviewing the progress of the network in preparation for the celebration of its first decade in 2019.

    Empowering volunteers for “on the ground” and “online” health promotion activities will also be prioritized this year. Last year, social media activities such as #FolicAcidPH and #NBSat20 did not only provide an avenue for advocacy for VYLs. These activities have also allowed the participation of more youth leaders and youth organizations through youth partner accreditation. Likewise, on-going activities such as the K4Health Community Youth Training Program and the implementation of the Kabilin Kalusugan Project will hopefully provide models for the network’s growth and program implementation.

    Seven years ago, the VYLH-Philippines family made a pact of empowering the Filipino youth for health and through everyone's help – VYLs, the secretariat, titos and titas, partner organizations and agencies, VYLH will be able to reach more youth leaders, more schools and more communities in order to advance the network’s mission and strengthen its contribution on building a healthier nation.#

    Written by Ryan Pascual with contributions from John Paul Oira and the activity reports of VYLs
    Edited by Rochelle Sarmiento and Jerard Monge (UPLB)


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    SAN JUAN CITY - The Department of Health–National Capital Region Office, in partnership with the Newborn Screening Center–National Institutes of Health, gathered patients found positive in one of the disorders being screened for a reunion at the Greenhills Elan Hotel Modern, San Juan City, on November 26, 2016. 

    The activity was attended by patients and parents of confirmed cases of Glucose-6-Phosphate Dehydrogenase (G6PD) Deficiency, Congenital Adrenal Hyperplasia, Congenital Hypothyroidism, Galactosemia, and Phenylketonuria. This year’s reunion focused on social interaction among participants with various games, music, charades, puzzles, and other fun activities.

    The Volunteer Youth Leaders for Health–South Luzon Cluster, led by Aster Lyn Sur and Rufus Aducul, joined in and facilitated the break-out sessions. Also, Dr. Anna Lea Elizaga gave a lecture to the parents on expanded newborn screening. NVictorio

    Written by Norrice Victorio
    Published in Newborn Screening, the official newsletter
    of the Newborn Screening Reference Center (NSRC)
    November-December 2016 Issue