Shining a Light on Rare Diseases: National Rare Disease Week 2025
Held annually during the last week of February under Presidential Proclamation No. 1989, National Rare Disease Week culminates in Rare Disease Day on February 28th—a global initiative to spotlight rare and often overlooked conditions.
This year, as part of the global chain of lights, the #LightUpForRare campaign lit up landmarks nationwide at 7 PM to show solidarity with patients and families. Participating sites included the:
- Rizal Monument (through the National Parks Development Committee)
- Quezon Memorial Circle (which featured week-long lighting)
- Philippine International Convention Center (PICC)
- National Museum of the Philippines (Fine Arts Building)
- Cultural Center of the Philippines (CCP)
- University of Santo Tomas (UST)
- De La Salle University (DLSU)
- National Council on Disability Affairs (NCDA)
- Department of Health – Center for Health Development in Davao (Region XI),
- and Provincial Local Government Unit of Lanao Del Norte
Participating sites of the Light Up for Rare Campaign (2022-2025)
Despite legislative efforts such as Republic Act 10747 or the Rare Diseases Act, many Filipino patients still face barriers to diagnosis, treatment, and support. Advocates continue to push for full implementation of the law to guarantee timely care and equal rights for people with rare diseases, treating them with the same urgency and dignity as other Persons with Disabilities.
Support organizations such as the Philippine Society for Orphan Disorders (PSOD), the Institute of Human Genetics, the Newborn Screening Reference Center, and Volunteer Youth Leaders for Health (VYLH) have stepped in to fill critical gaps through education, advocacy, and community building.
As Rare Disease Week 2025 concludes, the call to action remains clear: with stronger advocacy, public support, and government commitment, we can build a more inclusive healthcare system for all.
Photo: Cultural Center of the Philippines
About the Philippine Society for Orphan Disorders (PSOD)
The Philippine Society for Orphan Disorders (PSOD) is a non-profit organization whose mission is to uphold the primary concerns and welfare of individuals with rare disorders in the Philippines by directly addressing, supporting and protecting their health and general well-being. PSOD is dedicated to being the central network for the advocacy and effective coordination of all viable efforts to sustain a better quality of life for individuals with orphan or rare disorders. To learn more about Rare Disease, visit http://www.psod.org.ph
Original article from Newborn Screening Reference Center by Ms. Vina Mendoza.