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.
 

Advocacy


The Hemophilia Foundation of Upstate New York is a voice for people with bleeding disorders in both the public and private arenas.  We believe that patient advocacy and support is just as important as medical treatment.  In this spirit, we have been very active in representing the bleeding disorders community to federal and state officials along with private and corporate foundations and the media.  Educating all empowered institutions about our challenges and needs gives the bleeding disorders community a much needed voice of advocacy.

 

We are a member of the New York State Bleeding Disorders Coalition which unites many of the various bleeding disorders groups across the State into one unified and organized voice representing our issues, needs and concerns at the State level. 

 

Every year HFUNY participates in two important legislative initiatives.  We attend the National Hemophilia Foundation’s  annual “Washington Day” which brings together groups from across the country to advocate for policies and legislation at the federal level that are important to the bleeding disorders community and educate legislators about bleeding disorders.  At the State level we (as a member of the New York State Bleeding Disorders Coalition) attend an annual “Albany Day” with the same goals. 

Beyond government advocacy, we also individually advocate on behalf of patients.  We help patients and families navigate complex, ever-changing healthcare landscapes.  Whether it’s working with commercial insurance, Medicare or Medicaid, we can provide expert advice and support to help ensure that patients maintain appropriate coverage for their chronic health conditions. 

 

Successful advocacy relies on the people who are affected or involved telling their stories to those in power.  It is important that everyone in the bleeding disorders community feels confident that they can be part of the efforts to advocate for and improve the lives of those in that community.  The Hemophilia Foundation of  Upstate New York strongly encourages all of our patients and families to be part of this effort and we provide guidance and resources to do so.  Please contact us directly to ask how you can become involved.

 

Links & Resources:

 

Find your Federal Representative:  http://www.house.gov/representatives/find/

 

Find your Federal Senators:  http://www.senate.gov/general/contact_information/senators_cfm.cfm

 

Find your State Assembly Member:  http://assembly.state.ny.us/mem/search/

 

Find your State Senator:   http://www.nysenate.gov/

 

National Hemophilia Foundation Advocacy:  https://www.hemophilia.org/Advocacy-Healthcare-Coverage

 

New York State Bleeding Disorders Coalition:  http://nysbdcoalition.org/index.php

 

Hemophilia Federation of America Advocacy:  http://www.hemophiliafed.org/advocacy/