It was a historic moment for health care in the Philippines as two champions for differently-abled persons in the country joined hands to promote the welfare of individuals with rare diseases.
De La Salle-College of Saint Benilde (DLS-CSB) and the Philippine Society for Orphan Disorders (PSOD) signed a memorandum of understanding to formalize their collaboration yesterday afternoon (March 28, 2019) at the Centennial Hall of Club Filipino in Greenhills, San Juan.
PSOD and DLS-CSB will undertake program initiatives that will primarily sustain a quality of life for individuals with orphan disorders.
Present during the event were officials, partners and advocates of PSOD and DLS-CSB including orphan disorder patients and their parents, members of Benildean Parents in Action and the media.
PSOD is represented by Dr. Carmencita David-Padilla (Founder-Chairperson) and Cynthia Magdaraog (President). DLS-CSB is represented by Bro. Dennis Magbanua, FSC (President), Robin Serrano (VP for Advancement), Neil Parinas (VP for Lasallian Mission and Student Life) and Terence Tiu (Dean and Director of SPACE).
By definition, rare diseases or orphan disorders, are life-threatening, long-standing, progressive, disabling conditions that require multidisciplinary care. There are more than 7,000 rare diseases worldwide and the Philippines has already reported 63 of which can also be found in the country such as Fabry, Pompe, Gaucher and mucopolysaccharidoses.
True to its mission of promoting the Benildean education that is unique in the spirit of inclusion and innovation, DLS-CSB will primarily serve as the central network for the advocacy and effective coordination of all efforts.
The event launches the “I Am Rare Scholarship Fund” initiated by benefactor DLS-CSB alumnus Juan Dickoy Madaraog who has a rare disease called Pompe.
The program, which will be lodged to PSOD, endeavors to equip patients for future opportunities to improve their quality of life. PSOD will assess qualified scholars to be sent to college through the School for Professional and Continuing Education of SPACE, which offers diploma programs in Basic and Advance Painting and Multimedia Arts like Digital Photography, Web Design, Video Editing and more.
The Center for Inclusive Education (CIE) on the other hand will assist PSOD scholars on social coaching to help students to easily adapt to Benildean education and environment.