By Isabel Fernando (Class 2022)
In anticipation of National Rare Disease week, the Volunteer Youth Leaders for Health (VYLH) – Philippines launched the “Wear That You Care” campaign at the National Institute of Health Conference Room, UP Manila last Saturday, February 17, 2018. The launch was attended by guests and students from University of the Philippines Diliman, Los Baños, and Manila, UP College of Medicine, UP College of Nursing, St. Luke’s College of Medicine, Ateneo School of Medicine and Public Health, Ateneo De Manila University, and De La Salle University.
The program began with brief introductions by the attendees, followed by opening remarks by Rufus Thomas Adducul, the Cluster Coordinator of VYLH-NCR-South Luzon. Dr. Mary Ann R. Abacan then gave a short talk introducing the audience to the concept of rare diseases and their epidemiology. Dr. Abacan is a Metabolic Specialist based at the Institute of Human Genetics, and is also the Cluster Adviser of VYLH-NCR-South Luzon.
Mrs. Cynthia Magdaraog, President of the Philippine Society for Orphan Disorders (PSOD), introduced the society and its advocacy to support individuals afflicted by rare disorders. Finally, Ms. Zara Carbonell, the 2nd Princess for Miss World Philippines 2017 and Ambassador for Dear Self Organization, shared her unique travel experiences, and left the audience with an inspiring message of being open-minded about what the world has to offer.
A brief intermission number was then performed by Vicente, John Paul, and Peter John, who are siblings with Hunter Syndrome. They danced to “Lalaban Kami”, a song created by PSOD to represent the challenges and triumphs of its beneficiaries.
Kristel Limpot from VYLH-NCR-South Luzon then discussed the campaign for rare diseases, and encouraged the participants to post on social media to raise awareness. Afterwards, members of VYLH pinned denim ribbons on the participants, referencing the “genes” responsible for the rare diseases.
Aster Lynn Sur, the National Secretary for VYLH-Philippines, then gave the closing remarks for the program. Everyone present had their photo with their hands raised to support the patients with rare diseases, before adjourning to a short merienda of pancit and puto bumbong.
VLYH and PSOD encourages everyone to show their support by liking the Philippine Society for Orphan Disorders Facebook page, and sharing the post for National Rare Disease Week (February 22-28, 2018).
Photos by Markyn Jared Kho (Class 2020)