The Coalition for Hemophilia B, Inc. is a national non‑profit patient advocacy organization dedicated to improving quality of life for people with hemophilia B and their families through education, community-building, program services, advocacy, and outreach. Operating for more than three decades, the Coalition runs educational events, peer and family support programs, patient assistance and travel grants, and public policy advocacy focused on the hemophilia B community.
Advocacy for patient access to treatments and specialty care, insurance and reimbursement protections (including copay accumulator and cost-sharing protections), coverage and payment policies for new therapies including gene therapies, rare disease and disability policy, funding for research and clinical care, and programs to improve health literacy and psychosocial support for families.
Primarily funded through individual donations, philanthropic grants, event and program revenue, membership support, and corporate sponsorships and partnerships (including industry stakeholders and philanthropy).
Works collaboratively with national and regional bleeding-disorder and rare-disease organizations (e.g., National Hemophilia Foundation, Hemophilia Federation of America, regional hemophilia chapters such as Midwest Hemophilia Association), clinical provider networks, and industry and philanthropic partners.
Non-profit organization (national patient advocacy organization / 501(c)(3) style)
