585.704.9338 | 70 Linden Oaks 3rd Floor | Rochester, NY 14625

 

HFUNY VISION OF THE FUTURE:
People with bleeding disorders live their lives free of physical, financial and emotional burdens from their condition

HFUNY MISSION:
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

ABOUT HFUNY:
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.
 

Events and Programs

Events

For 2016, HFUNY is proud to sponsor a wide variety of supportive and educational programs for the Upstate New York bleeding disorders community. Please contact your HTC social worker to enquire or enroll. 

  • NHF Washington Days - February 24-26
  • Albany Days - March 20-21
  • "Rap Session" for Young Men with Hemophilia (age 14-18) - April 12th
  • World Hemophilia Day - April 17th
  • "PT for Me!" with Allison Pulvino, MSPT, CMP - June 7th
  • Seabreeze Day - June 26th
  • Red Wings Day - July 17th
  • NHF Annual Meeting/WFH Congress - July 21-28
  • Camp High Hopes - July 24-28
  • Camp Little Oak - July 31-August 6th
  • Double H Ranch - August 3-8th
  • Packet Pickup/Information Event - September 9th
  • Finger Lakes Triathlon - September 10-11th
  • 2nd Annual Bleeding Disorders Walk - October 1st
  • Workshop for Women with Bleeding Disorders - October 15th
  • Holiday Party - December 6th

 

 

 

 Patient Support Programs

HFUNY offers a Hemohilia Assistance Program (HAP), providing financial assistance for patients with inherited bleeding disorders who live and are served within the Upstate New York region.  For information regarding eligibility criteria and application guidelines, please contact your HTC social worker directly.