Legislative Advocacy


HHT: A National Health Problem

Hereditary Hemorrhagic Telangiectasia (HHT) is a long neglected national health problem that affects approximately 50,000-70,000 Americans or 1 in 5,000 people. HHT research has so far been funded solely by private contributions. HHT has never received any federal research funding while several less prevalent disorders have received significant amounts of federal research money.


HHT Diagnosis and Treatment Act Is Introduced in both Senate and House of Representatives in 113th Congress

S. 908

The “HHT Diagnosis and Treatment Act of 2013” (HHT DATA) was  reintroduced in the Senate by Senator Tim Johnson of South Dakota on May 8, 2013 and referred to the Senate Health, Education, Labor and Pensions Committee (HELP Committee).  


H.R. 4592

The HHT Diagnosis and Treatment Act of 2014 was introduced by U.S. Rep. Jim Gerlach of Pennsylvania and U.S. Rep. Jim Himes of Connecticut on May 7, 2014 and was referred to the Health Subcommittee of Health.

Our goal is to get as many Legislators as possible to co-sponsor this bill in order to move the bill out of committee, onto the floor for a vote, and then to passage by the end of the 113th Congress.


Co-Sponsor Goal vs. Actual

Senate:  35 / 6

U.S. House of Representatives:  100 / 2

If you want to see if your legislators have co-sponsored the HHT DATA Act, please go to our HHT Legislative Action Center at http://cqrcengage.com/hht/home and go to the box called "HHT Legislation We're Tracking" and click on the bill.


How Can I Help?

HHT Legislative Toolkit

There are many different levels of participating in legislative advocacy for HHT as you can see from the list below.  Whether you choose to come to Washington D.C. for a Capitol Hill Day or advocate for HHT right from the comfort of your own home, we need you to get involved in any way you can.    Please review the list below and make a commitment to act.

  1. Email Your Legislator - It only takes 2 minutes! Let your legislators hear from you through a pre-written email; all you need to do is enter your contact information, write a brief message about how HHT has impacted you, and hit the submit button. It's that easy!
  2. Send the Engage links to family, friends, and colleagues - Each legislator's office counts the number of emails they receive for each topic. You don't have to have HHT to advocate for it. The Engage link is http://cqrcengage.com/hht/home.
  3. Petitions - Gather as many signatures as you can to your Senators and House Representative.
  4. Personal Visit to your legislators' district office.
  5. Join our advocacy team by contacting Sharon Williams, Manager of Legislative Advocacy.