What the HHT?
A blog for the HHT community
Invitation: 2025 HHT Patient and Physician National Conference
I’m so excited to introduce myself to this amazing community. My name is Hellen Tecle, and I stepped into the role of Manager of Community Events and Education here at Cure HHT just a little over four months ago. In that short time, I’ve been amazed by the strength of this mighty organization, and even…
Read MoreBeyond the Visible: Tobias’ Story
Hereditary Hemorrhagic Telangiectasia (HHT) manifests differently in everyone. For Tobias, its early signs were subtle and dismissed. From a young age, he battled frequent headaches and struggled with breathlessness, even during light activity. On the playground, he was always the first to tire, leading to hurtful comments about his fitness and a significant blow to…
Read MoreA Major Step Forward for HHT Treatment: Promising Preclinical Data from Diagonal Therapeutics
We’re excited to share two important updates from our partners at Diagonal Therapeutics. At this week’s European Hematology Association (EHA) Congress, Diagonal Therapeutics presented promising preclinical data demonstrating the potential of their antibody approach to address key challenges in HHT disease manifestations: Restoring ALK1-mediated cellular signaling Preventing and reversing arteriovenous malformations Preventing HHT-associated anemia And just recently…
Read MoreBeyond: 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…
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