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 of 2013

S. 908

The two HHT bills (HR 2123 and SR 1167) introduced in the House of Representatives and the Senate expired with the 112th Congress.  The bills would authorize $5 million every year for the next five years to improve early detection, screening, diagnosis, and treatment of HHT.  We had the support of 35 Representatives and 11 Senators, but it was not enough to move the bills out of committee and onto the floor for a vote.

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).  The HHT Legislative Committee is currently pursuing several House Representatives to reintroduce the HHT DATA Act in the House.  Once reintroduced in the House the bill will be referred to the Health Subcommittee of the Energy and Commerce Committee.  Our goal is to get as many Legislators as possible to co-sponsors this bill in order to move the bill out of committee, onto the floor for a vote, and then to passage.

Co-Sponsor Goal vs. Actual

Senate:  35 / 3

U.S. House of Representatives:  100 / 0

View a full list of current Co-Sponsors


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.