HFUNY VISION OF THE FUTURE:
People with bleeding disorders live their lives free of physical, financial and emotional burdens from their condition
The Hemophilia Foundation of Upstate New York strives to ensure the quality of care and life for people affected by bleeding disorders via education and support
The Hemophilia Foundation of Upstate New York was formed in late 2010. Its creation was spearheaded by a small group of volunteers who receive their care at the Mary M. Gooley Hemophilia Center (the Center) in Rochester – former Center board members. HFUNY is an independent NYS 501c3 not-for-profit, seeking relationships with affected people and hemophilia organizations in communities across the Upstate region.
Because the (Rochester) Center functions as both an HTC (Hemophilia Treatment Center) and a patient organization (the chapter was founded first and it started the HTC in 1959), it has not been able to support people and families directly the way many chapters do (e.g., as a provider, it could not have a robust patient assistance program).
HFUNY was born to fill this need and to bolster educational efforts in support of affected families across the region. The HFUNY founders envision an active, flexible organization that will engage in supportive, collaborative, transparent relationships with existing patient organizations and providers.