by Vina G. Mendoza
Held annually during the last week of February under Presidential Proclamation No. 1989, Rare Disease Week culminates in Rare Disease Day on February 28th—a global initiative to spotlight rare and often overlooked conditions. This year, the #LightUpForRare campaign lit up landmarks nationwide at 7 PM to show solidarity with patients and families. Participating sites included the Rizal Monument, the Philippine International Convention Center (PICC), Quezon Memorial Circle (which featured week-long lighting), the National Museum (Fine Arts Building), the University of Santo Tomas, the Cultural Center of the Philippines (CCP), the National Council on Disability Affairs (NCDA), De La Salle University (DLSU), the Department of Health – Center for Health Development in Davao, and the Local Government Unit of Lanao Del Norte.
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.
