What the HHT?
A blog for the HHT community
Posts by Valaree Machen
Beyond: Looking at the Diverse Faces of HHT
Hereditary Hemorrhagic Telangiectasia (HHT) is a genetic disorder that, despite being present from birth, often goes undiagnosed for many years. A common scenario involves a family member receiving a diagnosis, which then prompts others to seek testing. Even without genetic confirmation, a clinical diagnosis can be made based on characteristic symptoms. The variability in how…
Read MoreFacebook Live: Empowering Patient Stories
Facebook Live: Empowering Patient Stories Thurs., June 19th | 1:00 p.m. (ET) Join us for an inspiring and informative webinar, “Empowering Patient Stories,” on June 19 at 1:00 PM ET. This session is designed to equip you with the tools and confidence to share your unique HHT journey effectively. We are honored to feature Jessica…
Read MoreCozy Games for a Cure
Cozy Games for a Cure Sat., June 21, 2025 | 10am CST Gaming streamer consolecaito will be hosting a charity stream supporting Cure HHT on June 21 at 10am CST! More details about giveaways, watch links, and more will be released shortly.
Read MoreBlood Drive: Boston
Blood Drive: Boston June 19-20, 2025 Calling on Boston! Our Director of Research, Cassi Friday, is organizing a local blood drive in Boston from June 19-20. Interested in donating? Fill out this form: https://curehht.qualtrics.com/jfe/form/SV_9GDuLOZR8QoM0PI Why: To better understand HHT and develop therapies, we need human tissues to study. The lack of available blood samples and…
Read MoreTime is Running Out: Support HHT Centers by May 19th
We are calling upon this mighty community to help support our efforts to protect and expand federal funding for our HHT Center of Excellence program. We need as many community members as possible to encourage your members of Congress to sign our “Dear Colleague Letter” in support of our HHT Center of Excellence program in the…
Read More