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Cure HHT is the only organization in the US advocating for research, education and a cure for Hereditary Hemorrhagic Telangiectasia, Osler-Weber-Rendu Syndrome

Monkton, MD 21111 USA
Joined October 2009
Photo by Cure HHT (@curehht)Photo by Cure HHT (@curehht)Photo by Cure HHT (@curehht)Photo by Cure HHT (@curehht)Photo by Cure HHT (@curehht)Photo by Cure HHT (@curehht)Photo by Cure HHT (@curehht)Photo by Cure HHT (@curehht)Photo by Cure HHT (@curehht)Photo by Cure HHT (@curehht)
This community carried us 83% of the way. 💙 Now we’re asking you to help finish what we started. Less than $95,000 remains — and every gift is DOUBLED thanks to our match. Let’s close the gap together. Donate before December 31 to make a difference: curehht.org/give
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BREAKING NEWS: @atavistikbio announced a $120M Series B to advance programs including an oral AKT1-selective approach for HHT. We’ll share trial details (sites/eligibility/timing) as they’re released. mailchi.mp/curehht/exciting-… #HHT #RareDisease #ClinicalTrials
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Because of the research and progress driven by Cure HHT, Lance believes in a real blueprint to a cure — and a better future for his family. Matching funds are still waiting to be unlocked. ❤️ Give now: curehht.org/give youtube.com/watch?v=bkWCZzSH…
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Have you checked out our store lately? New items are available in time for the holidays! Support our Blueprint for a Cure campaign and spread awareness at the same time: store.curehht.org/collection…
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Big news for HHT! A new trial from @MassGenBrigham shows engasertib may significantly reduce bleeding, improve hemoglobin, and is well-tolerated. A major step forward for our community. mailchi.mp/curehht/exciting-… #HHT #RareDisease
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Have you checked out our store lately? New items are available in time for the holidays! Support our Blueprint for a Cure campaign and spread awareness at the same time: store.curehht.org/collection…
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Have you checked out our store lately? New items are available in time for the holidays! Support our Blueprint for a Cure campaign and spread awareness at the same time: store.curehht.org/collection…
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Thank you to Tectonic Therapeutics for their Bronze-level support of the 2025 HHT Patient and Physician National Conference! We’re grateful to all our sponsors helping advance care, research, and hope for people with HHT. 💙 #CureHHT #HHTConference
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We're optimizing our design and layout! Our Fall Newsletter recently dropped and it has a fresh new design! 🔗 Click here to read: curehht.org/news-resources/n…
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Exciting news! Cure HHT’s CHORUS registry data has been selected for oral presentation at ASH 2025 — marking the first national presentation from CHORUS and a major step forward in raising HHT awareness among hematologists. Learn more → curehht.org/cure-hhts-regist…
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Early Bird extended through Oct 12! Join us Nov 8–9 in Dallas for the 2025 HHT Patient & Physician National Conference—two days of learning, connection & breakthrough science. Don’t miss it ➡️ curehht.org/national-conf
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Only 2 days to go! Join Cure HHT’s virtual webinar for adults in Canada and the US to learn about a clinical trial for hereditary hemorrhagic telangiectasia (HHT). Visit ow.ly/UcOu50WIYEZ to sign up.
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Our Patient & Physician National Conference is more than a medical meeting — it’s a chance for patients, families, and healthcare providers to sit side-by-side. We’ll share stories, build understanding, & discover the latest in research and treatment: curehht.org/national-conf
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Every time we show up at meetings like this, we’re building connections, sharing our story, and opening doors for new treatments. #HHT
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We need your help to keep the momentum going. On Sept. 10, Cure HHT is hosting a Congressional Briefing in DC — and we need as many advocates and lawmakers as possible in the room. Join us yourself or ask your Senators and Representative to attend: mailchi.mp/curehht/congressi…
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Tuesday, Qs-day is back! Today's question is... telangiectasias are found in about 95% of all people with HHT, where are they primarily located on the body?
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Living with HHT has taught me ___. For some, it's patience. For others, it's the value of advocacy, research, and never giving up. Whatever your answer, it matters — because every lesson learned helps shape the future of HHT care and potential treatments.
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Get ready for the 2025 National Patient and Physician Conference! Join Cure HHT this November to unite with fellow community members, learn from experts, and collaborate on the latest in HHT care. Book your hotel, purchase tickets, and more at: curehht.org/national-conf
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🚨 Live near San Francisco and have HHT? You’re in the perfect spot to join the AVIATOR Study—a major research project is testing a new all-in-one scan for AVMs in the brain, lungs, and liver. curehht.org/research-overvie…
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Cure HHT is inviting adults in Canada and the US to join an informative webinar about an upcoming clinical trial evaluating whether an investigational medication has the potential to treat hereditary hemorrhagic telangiectasia (HHT). Register now: curehht-org.zoom.us/webinar/…
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