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Advocacy

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Become an Advocate Today!

The US HAEA’s dynamic and growing grassroots advocacy work ensures that your voice  – patient, caregiver, family member – is heard.

HAEA’s advocacy and public policy program monitors and influences legislative and regulatory issues that affect  everyone living with all types of Hereditary Angioedema.  This advocacy work highlights HAEA’s positions on such important issues as accurate and timely disease diagnosis, access to HAE treatment, the continued development of new HAE therapies and funding for HAE scientific research.

HAEA executive staff collaborate strategically with other rare disease organizations, coalitions, and government agencies to ensure that the interests of HAEA members are seriously considered in decisions important to all of our futures.  HAEA is at the tables of:

  • Plasma Protein Therapeutics Association (PPTA)
  • U.S. Food and Drug Administration  Patient-Focused Drug Development
  • Patient Centered Outcomes Research Institute
  • Coalition for Accessible Treatments
  • American Plasma Users Coalition

Recent advocacy successes include:

  • Senate Resolution recognizing May 16 as HAE DAY in the United States
  • testimony by HAEA President Anthony J. Castaldo before the Senate Appropriations Committee – asking for more federal funding for HAE research
  • in-person visits by patients to key congressional offices on Capitol Hill

What does an HAEA Advocate DO?

As an HAEA Advocate, you can choose from a number of volunteer activities – as many or as few as you wish!

  • Receive updates for the latest action alerts, updates on HAEA’s advocacy efforts, and news of successes
  • Write to my congressional representatives
  • Meet with my congressional representatives in their local offices
  • Be willing to be considered for in-person visits, if asked, to legislative offices in DC
  • Be willing to be considered for Capitol Hill Days, if asked, to lobby for federal funding for research, etc.

 

On Your Behalf
The HAEA closely monitors all issues that may impact access to or quality of care for HAE patients.  We are fortunate to have an HAEA community that is eager to share their personal HAE journeys and that is enthusiastic about making a difference for all HAE patients and their families on key legislative issues.

Your legislators will only take action if YOU ask them to.  Become an HAEA advocate today!

Click here to register!

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