Capitol Hill
Advocacy
The HAEA leads a nationwide advocacy movement focused on maintaining a strong political advocacy presence in health related legislative and regulatory policy. The HAEA vigorously fights on behalf of patients when any health policy or "access to therapy" challenge arises. We also play a prominent role in important national rare disease patient coalitions. Our primary public policy event of the year is Capitol Hill Day. We organize a large group of HAE patients who visit at least 60 strategically selected House and Senate offices to discuss the public policy strategic goals listed below:

  • Ensure HAE is recognized as a condition eligible for study through the Department of Defense Peer-Reviewed Medical Research Program
  • Lead community efforts to improve patient access to quality, affordable healthcare, and innovative treatments
  • Expand the HAEA, and related conditions research portfolio at the National Institutes of Health (NIH) through growth in FY 2018 appropriations and demonstrated congressional interest in this area
  • Cultivate a national network of grassroots advocates capable of effectively engaging their elected officials to advance a legislative and public policy agenda
  • Stay current and engaged on relevant legislative and public policy issues by monitoring media outlets, participating in coalition advocacy activities, and attending events on Capitol Hill

If you're interested in becoming a patient advocate, please submit the form on our "Contact Us" page, and share your interest in the "Questions or Comments" text box.