HFA News & Notes

HFA Observes National Hepatitis Awareness Month

HFA Observes National Hepatitis Awareness Month FOR IMMEDIATE RELEASE: May 3, 2012 Contact: Richard Pezzillo [...] Read More >>

Community Pharmacists Lose Bid to Immediately Block Express Scripts-Medco Deal

By Rebecca Adams, CQ HealthBeat Associate Editor A federal judge has denied the request of a group of community [...] Read More >>

People with Bleeding Disorders and HCV

Link to Access HCV Therapy Site Friends and supporters, We should all be enormously encouraged by the increasing [...] Read More >>

Contact Info

Hemophilia Federation of America
210 7th St. SE, Suite 200B
Washington D.C., 20003
800.230.9797
202.675.6984
202.675.6983

© 2011 Hemophilia Federation of America · Board of Directors Only · BB Admin Only · Privacy & Legal

Congrats PACT Foundation Winners!

PACT on HANJ’s Website

The PACT Program and the PACT Foundation Grants are two exciting services that are available to other chapters/associations throughout the country. HANJ, under the direction of Elena Bostick, administers both programs through Baxter Bioscience sponsored grants.

Please review both programs and take note of featured deadlines as they are posted.

CONGRATULATIONS!

2012 PACT Foundation Grant Winners

  • Hemophilia & Bleeding Disorders of Alabama, Inc.
  • Arizona Hemophilia Association
  • Hemophilia Foundation of Illinois
  • Hemophilia Foundation of Minnesota/Dakotas
  • New York City Hemophilia Chapter
  • New England Hemophilia Association
  • Hemophilia of North Carolina
  • The Delaware Valley Chapter
  • Virginia Hemophilia Foundation

PACT Workshop Program

The Partnership for Advocacy and Communications Training (PACT) workshop is a one and a half day advocacy workshop, which is sponsored by an unrestricted educational grant from Baxter, but facilitated and organized by the Hemophilia Association of New Jersey (HANJ). The goal of the workshop is to provide organizational development, education and enhanced advocacy skills to state hemophilia chapters and associations.

The workshop includes a combination of outside speakers from state government and private institutions as well as peer-to-peer education. Each participant will receive a binder with detailed case studies and sample letters on topics such as fundraising, advocacy and organizational and committee structure.

Dates for this year’s workshop will be announced within the next few weeks. Participant expenses are fully reimbursed through the HANJ.

If you or one of your state organizations would like more information about the program please contact Elena Bostick at the Hemophilia Association of New Jersey office at 732-249-6000 or hemnj@comcast.net.

Purpose of the PACT Grant Program

Over the past several years the hemophilia consumer and provider community has had serious concerns regarding the changing health care environment. At issue has been the need to maintain quality care for all persons affected by hemophilia. The rapidly changing marketplace has raised questions about the future of hemophilia care delivery, and patient access to the full range of needed products and services, including access to the appropriate specialty providers who offer them. The challenge is to preserve policies and programs that ensure patient access.

It has become apparent that aggressive, state-based advocacy offers the greatest opportunity to identify and respond to potential threats and opportunities. In 2005 Baxter BioScience agreed to fund a pilot program which would support state advocacy initiatives that are geared toward maintaining and/or expanding access to high quality care for persons with hemophilia. To date 51 grants have been awarded for a total of $1,162,300.

As an example, some previously submitted PACT projects sought to:

  • Protect access to medicine and services through state legislation.
  • Conduct grassroots advocacy campaigns, directed at key decision makers, in an effort to preserve quality of care.
  • Provide a specific and valuable resource to consumers, individually, to help them maintain access.