Upcoming LIVE Webinars
When: February 12, 2018 from 5-6pm EST
Presented by: Mark Vieth, Sr. Vice President for CRD Associates
Join Cure HHT Legislative Advisor Mark Vieth for a behind-the-scene look at how Cure HHT can impact federal research funding and awareness of this disease and your role in the process. HHT has received significantly less federal funding than many other rare diseases. This needs to change! It is time to convert the voice of the HHT community into increased federal funding for HHT research. A cure is on the horizon, we just need your voice and engagement in the process to change legislation in Washington, DC and advance HHT research to the next level.
Over the past nine years, Cure HHT has funded legislative activities that resulted in Congressional Language recognizing Hereditary Hemorrhagic Telangiectasia, HHT specific conferences with National Institutes of Health (NIH) and the Centers for Disease Control and Prevention (CDC), NIH funding for five HHT researchers to receive $10,542,000 since 2008, the inclusion of vascular malformations in the Department of Defense research funding programs that has allowed eight HHT researchers to receive $15,885,199 since 2015, and the most recent collaboration with the CDC and Hemophilia Treatment Center pilot study.
In 2017, HHT researchers received $5.7MM in federal funding. While this is up from $2.2MM in 2015 and $500,000 in 2012, it is still substantially less than other rare diseases that impact fewer people. For instance, in 2017 Muscular Dystrophy received $82MM in federal funding (affects 1 in 6,500 people) and Huntington’s Disease received $39MM in federal funding (affects 1 in 10,000 people).
“What a wonderful webinar tonight about HHT, and how it affects the liver and the heart. Awesome!”
“I am a Nurse Practitioner and I learn so much from these webinars about my husband’s HHT. My two daughters have it as well.”