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.

Plahn-Senator Johnson

“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.  As our nation’s health care system transitions toward a focus on keeping people healthy, this bill provides important tools to detect and treat HHT and improve outcomes for those living with this disorder.”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,” U.S. Rep. Jim Gerlach said. “With the 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 ten 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 and Diagnosis 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. Through the work of the NIH and CDC, we can help reduce suffering for HHT patients, further our nation’s strong commitment to medical research, and lower healthcare costs.” U.S. Rep. Jim Himes


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 Popvox 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. Share it: https://popvox.com/bills/us/114/hr1849.
  3. Petitions - Gather as many signatures as you can to your Senators and House Representative.
  4. Schedule a Personal Visit to your legislators' district office and bring the HHT DATA Act Factsheet.
  5. Join our advocacy team by contacting the Cure HHT office at 410-357-9932.