What the HHT?
A blog for the HHT community
Blog
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 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 MoreUrgent Action Needed: Protect Funding for HHT Research
Dear HHT Community, We need your help right now to protect critical funding for HHT research. As early as this Tuesday, the House will be voting on a Continuing Resolution to fund government programs through the end of Fiscal Year 2025. Unfortunately, the legislation cuts funding for the Department of Defense’s Congressionally Directed Medical…
Read MoreDiagonal Therapeutics Initiates Natural History Study of Adults Living with Hereditary Hemorrhagic Telangiectasia (HHT), a Rare Bleeding Disorder with No Approved Treatments
Diagonal Therapeutics Initiates Natural History Study of Adults Living with Hereditary Hemorrhagic Telangiectasia (HHT), a Rare Bleeding Disorder with No Approved Treatments Study conducted in partnership with Cure HHT will inform future clinical trials and treatment options for people living with HHT Company recently progressed DIAG723 into IND-enabling studies for HHT and pulmonary arterial hypertension…
Read MoreInnovative Hematology Achieves Prestigious HHT Center of Excellence Certification
We are thrilled to share that Innovative Hematology, home to the Indiana Hemophilia and Thrombosis Center (IHTC), has officially earned the coveted designation as an HHT Center of Excellence. This marks another significant step forward in our fight to increase access to specialized care for our community. This prestigious certification places Innovative Hematology among an…
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