Rare diseases are life-threatening or chronically debilitating diseases that affect 1 in 20,000 Filipinos, most of whom are children. Individuals afflicted with rare diseases face burdens such as possibly delayed or inaccurate diagnosis due to limited scientific knowledge on rare diseases, lack of or unequal access to quality treatment and care, as well as the social consequences brought about by their condition.
Republic Act No. 10747 or the Rare Diseases Act was enacted in 2016 and aims to improve the access of individuals diagnosed with rare diseases to comprehensive medical care and timely health information. Alongside this, the passage of Republic Act No. 11223 or the Universal Health Care Act provided a health care model to support all Filipinos, including those with rare diseases, with access to quality and affordable health services.
The Department of Health (DOH) recently issued the Integrated Rare Diseases Management Program (IRDMP) Strategic Plan for 2022-2026 to support the implementation of the Rare Diseases Act vis-à-vis Universal Health Care. The Strategic Plan aims to serve as a guide for the planning and development of policies, programs, and activities across different sectors to address rare diseases and support individuals affected by rare diseases.
The Pharmaceutical Committee of AmCham has invited Dr. Razel Nikka Hao from the DOH to provide an overview of the guiding principles and the strategic objectives of the IRDMP Strategic Plan for 2022-2026. The session will also hear from Patient-Advocate Juan Benedicto "Dickoy" Magdaraog and President Cynthia Magdaraog of the Philippine Society for Orphan Diseases (PSOD) about the Patient-Family Journey of Persons Living With a Rare Disease (PLWRD).