What the HHT?
A blog for the HHT community
Posts by Valaree Machen
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…
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 MoreRecording Available: 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.
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