The Hemophilia Philippines (HAPLOS Community) Foundation, Inc. proudly participated in the National Rare Disease Forum organized by the Department of Health (DOH) in collaboration with the Philippine Society for Orphan Disorders, Inc. (PSOD), held last February 23–24, 2026 at the Manila Prince Hotel, Manila.
The forum brought together patient organizations, medical societies, healthcare leaders, and government stakeholders to advance coordinated action for persons living with rare diseases in the Philippines.
Elevating the Voice of the Bleeding Disorders Community
In her presentation, Dr. Hernandez emphasized how HAPLOS has evolved from a grassroots patient support group into a strong advocate for national policy integration, guided by the vision of “Nurturing, Enabling, and Empowering the Rare Bleeding Disorder Community.”
Key HAPLOS Initiatives Highlighted at the Forum
- Humanitarian Access to Treatment – Facilitating the distribution of life-saving clotting factor concentrates through global partnerships.
- Health Technology Assessment & National Formulary Advocacy – Championing corrections in the Philippine National Formulary, including proper dosing standards for Factor VIII and equitable inclusion of Factor IX—underscoring that rarity should never be a barrier to access.
- National Bleeding Disorder Registry (HANAP Program) – Leading efforts to establish a comprehensive national registry, with a call for government-mandated participation to ensure data-driven healthcare planning and equitable resource allocation.
- PhilHealth Collaboration for Sustainable Care – Working toward a national shift from emergency-based treatment to preventive prophylaxis through the development of a sustainable hemophilia benefit package.
Dr. Hernandez concluded with a clear roadmap for the future—anchored on policy reform, access to medicines, data integration, and sustainable financing—aimed at achieving a bleed-free Philippines.
Forum Participation
HAPLOS was formally invited as part of the Patient and Advocacy Groups session held on February 23, 2026.
Dr. Flerida G. Hernandez represented HAPLOS alongside fellow advocates from MSUD Parent Support Group, SMA Philippines, Volunteer Youth Leaders for Health, and the Global Nurses Network for Rare Diseases—demonstrating a unified, multi-sectoral effort to advance rare disease care in the Philippines.
Solidarity Across the Rare Disease Community
Moving Forward Together
HAPLOS’s participation in the National Rare Disease Forum underscores its continued leadership in both community empowerment and national health policy advocacy.
As the organization moves forward, it remains committed to working with government, healthcare institutions, and global partners, ensuring that every Filipino living with hemophilia receives accessible, equitable, and sustainable care.
