Legislative Advocacy

HHT: A National Health Problem

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

How Can I Act Now?
Legislative Factsheet

There are so many different ways to advocate for HHT legislation! Whether you choose to come to Washington D.C. for Capitol Hill Day or advocate for HHT in your home state, we need you to get involved in any way you can. It's time to Act Now!

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! Don't forget to ask family, friends and colleagues to get in on the advocacy.

District Visits - This is an ideal year to schedule a visit with your legislator because they will be working from home for extended periods. Use this step-by-step guide to schedule an advocacy appointment.

Petitions - Gather as many signatures as you can to your Senators and House Representative.

Join our advocacy team by contacting the Cure HHT office at 410-357-9932.

Still not sure how to get started? Break out the Cure HHT Legislative Tool Kit.

From Our Supporters:

“This bill will help fill a gap in care for thousands of patients suffering from HHT and provide patients and physicians with the resources necessary to educate, screen for, treat and better understand this sometimes deadly disease. Continuing to disregard the need for simple screenings and broader education for treatable diseases, like HHT, that could help save lives and reduce costs is unacceptable.” U.S. Senator Tim Johnson from South Dakota

“Expanding research and broadening our understanding of HHT hopefully will lead to treatment breakthroughs that can save lives,” said U.S. Rep. Jim Gerlach. “With greater awareness of HHT, early detection screenings and national HHT research database this bipartisan legislation provides, we also can make significant progress in ending the suffering for those living with HHT and their families.”

“Nine in 10 individuals affected by HHT are unaware that they have it, putting them at risk for sudden internal bleeding, stroke and disability, and even death. The HHT DATA Act, which I was pleased to introduce with Representative Gerlach, will support much-needed federal research and surveillance efforts to improve HHT early diagnosis and treatment.” U.S. Rep. Jim Himes