What the HHT?
A blog for the HHT community
Awareness
Facebook Live: The Power of Advocacy
Advocacy changes lives—and it changes policy. Join Cure HHT for a free 45-minute Facebook Live panel: The Power of Advocacy. What we’ll cover – What HHT Capitol Hill Day is (and what it’s not) – What to expect as a participant – What we’re advocating for and why it matters – Q&A: bring your questions—especially…
Read MoreReflections from the Next Generation
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.
Read MoreCapitol Hill Day 2026
This is your moment. Join us in Washington, DC. Stand up for the HHT community. Help make HHT impossible to overlook — and impossible to delay. Let’s make 2026 the year lawmakers finally recognize the urgency we live with every day and commit to the progress we know is possible. Become an HHT advocate: curehht.org/advocacy26
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 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…
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