Students of De La Salle University-Dasmarinas’ Master of Sustainable Leadership and Governance (MSLG) program launched a month-long exhibit at the DLSU-Dasmarinas campus, De La Salle Medical and Health Sciences Institute (DLSMHSI), and the De La Salle University Medical Center (DLSUMC) as part of the observance of the National Rare Disease Week and global Rare Disease Day.
The exhibit, with the theme “Dare. Love. Share: Raising Rare Disease Awareness towards Equity in Healthcare,” will run from February 28 to March 25, 2023. The event seeks to highlight the challenges of people living with rare diseases, among them the lack of information and awareness about their disorders, as well as the limited number of medical professionals who are equipped to deal with these illnesses.
The event was held in collaboration with the Philippine Society for Orphan Disorders Inc. (PSOD), a non-profit organization established in 2006 to serve as the patient support group for Filipinos living with a rare or orphan disorder. Rep. Lani Mercado-Revilla, who is enrolled in the MSLG program, served as the group’s representative.
In her message, she highlighted that there is a need to take care of Filipinos living with a rare disease. As a member of Congress, she committed to bringing rare disease advocacy to her peers in the Lower House, as well as extending support to the rare disease patients of her district.
In 2016, the Rare Diseases Act of the Philippines (RA 10747) was enacted into law in order to institutionalize a comprehensive and integrative system for the provision of early and sustainable care for Filipinos living with rare diseases.