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What the HHT?

A blog for the HHT community

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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Recording 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…

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Cozy 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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Blood 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…

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Webinar: Mental Health & HHT

Mental Health & HHT Tues., June 24th  |  12:00 p.m. (ET) Living with Hereditary Hemorrhagic Telangiectasia (HHT) presents unique physical challenges, and this webinar will address the often-overlooked impact on mental well-being. Join us for a supportive discussion exploring the emotional aspects of managing a chronic condition like HHT. Our expert speaker Abbey J. Hughes,…

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