In observance of the 12th National Rare Disease Week, the Institute of Human Genetics together with the Philippine Society of Orphan Disorders and the Volunteer Youth Leaders for Health – Philippines (VYLH) launched their first webinar on rare diseases entitled “Puhon: Progress and Perspectives in Caring for the Filipino Rare” last 25 February 2021 via the Zoom webinar platform.
The event was opened by the Director of the Institute of Human Genetics Dr. Maria Melanie Liberty Alcausin followed by an inspirational message from the Philippine Undersecretary of Health for Public Health Services, Dr. Maria Rosario Vergeire. She emphasized that all individuals including those with rare disease should have access to quality healthcare. While this is a seemingly arduous task, she believes that it is attainable but “necessitates a whole of government, a whole of system and a whole of society approach”. She ended her message with a commitment statement that “the Department of Health will continue to provide the necessary assistance in order to further the advocacy for rare diseases as it is an integral part of the overall objective of the universal healthcare to provide health services to all Filipinos.”
Dr. Mary Ann Abacan, a clinical geneticist – metabolic specialist and one of the advisers of VYLHPhilippines, went on to discuss the basics of rare diseases. She stated that rare diseases are also called orphan disorders because they have been neglected, especially in terms of treatment, for many years. At the same time, rare disease patients suffer from social abandonment because of the lack of an existing network of support to aid them. She reiterated that treatment is available for some of the rare diseases and that everyone can take their part in advocating for public awareness.
UP Manila Chancellor Dr. Carmencita Padilla, main proponent of the Rare Disease Act of the Philippines, discussed the existing landscape of rare diseases locally and internationally. She underscored that even with the enactment of the law, big challenges are still being faced due to the huge cost of individual care and the lack of a national program and sustainable funding. The full implementation of the law as well as the inclusion of rare disease in the Universal Health Care Law are of utmost importance in providing the needs of these patients.
Dr. Ann Ysabelle-Andres of DOH’s Disease Prevention and Control Bureau laid out the DOH’s initiative to develop a national strategic plan on integrated rare diseases management for the period 2022-2027. This includes identification, referral, management, registration, and resource generation thereby ensuring that these patients are guaranteed equitable access to quality health care goods and services.
The event was also graced by Mr. Rizalino Sanchez of the National Council on Disability Affairs and two parents who shared their experiences in caring for their child with a rare disease. The webinar was closed by Mrs. Cynthia Magdaraog, President of the Philippines Society for Orphan Disorders, who expressed her hope for progress with the strong partnership and renewed commitment of the government and the academe.#
Published in the UP Manila Newsletter HealthScape
Special COVID-19 Issue No. 24 (February 2021)
Published by the UP Manila - Information, Publication, and
Public Affairs Office (IPPAO)
