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What the HHT?

A blog for the HHT community

HHT: A Whole System Disease

HHT is often introduced to the world through a single symptom — nosebleeds. But HHT is never only one thing. It is a whole system disease, one that touches organs, families, and futures.

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Beyond 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…

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A 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…

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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…

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