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Monday 9am - 5pm Tuesday 9am - 5pm Wednesday 9am - 5pm Thursday 9am - 5pm Friday 9am - 5pm

Cure HHT

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Our mission is to find a cure for HHT while saving the lives and improving the well-being of individuals and families affected by HHT around the world.

Hereditary Hemorrhagic Telangiectasia (HHT) is an inherited disease that affects over 1 million people worldwide. It is caused by defective blood vessels in the brain, lungs, liver, nose, skin, and intestines, and typically begins with nosebleeds during childhood. HHT is highly treatable but can result in serious health problems if not promptly diagnosed and treated.

10/23/2026

It's been one week since in Cape Cod!

We had the best time hearing from our researchers, advocates, clinical partners, and long-time friends. This conference was a fantastic opportunity to share what is ongoing and coming up in the world of HHT research.

Thank you to all who attended—your presence, participation, and excitement mean the world to us.

10/21/2026

An upcoming webinar about the new Harmony-HHT trial from Atavistik Bio will include a discussion of how patient feedback was instrumental in designing the trial, details on who is eligible to participate in this exciting new study, and how to access participating centers.

Register to learn more about the new therapy: https://loom.ly/Va1dqGA

10/20/2026

“Our stories are what move us from an asterisk in a medical textbook to a community worth as much attention as any cancer or other disease.”

Terry, Cure HHT's Board of Trustees Chair, knows what it feels like to be uncertain about the future. He's sharing the story of his daughter's surgery in hopes that his family's experience inspires others to share their stories, which directly impact the knowledge and science that can change what an HHT diagnosis means for the next generation.

Help us change the future of this disease (your gift will be matched until the end of the year!): https://loom.ly/9dK6gRw

10/19/2026

Cure HHT is proud to recognize the researchers, clinicians, leaders, and emerging investigators who asked tough questions, built expertise, connected a scattered community, and helped turn HHT into a global field of research.

We are deeply grateful to every person recognized this year—and to the many researchers, clinicians, families, advocates, and partners whose work surrounds theirs. Our field is in excellent hands.

Read the full announcement: https://loom.ly/_e-rzSY

10/16/2026

Before our attendees break out into small working groups, Cassi Friday, PhD, Senior Director, Research Programs and Grants of Cure HHT, shares where we currently stand in the patient-informed research roadmap.
Some highlights:

- 1,055 patients enrolled in CHORUS
- 2,579 data elements across 72 groups
- 241 patients enrolled in HHT Connect (71% female)
- Established working groups like PAH-HHT, Women’s Health Initiative, and Liver & Heart.
- Due to the progress we’ve had in research, we are almost ready for the 3rd Edition of the International Guidelines.
- Original research is on the rise!
- 1,242 pieces of HHT research were mapped to Cure HHT’s Research Roadmap.
- 61% of 2026 HHT International Scientific Conference abstracts were aligned to the priorities set by the Cure HHT Research Network.

Are we there yet? No. But we’re ready to extend the map for the next steps of the Research Roadmap.

Learn more about Cure HHT's research updates: https://loom.ly/3yD3kLo

Did you know? The Cure HHT Biobank accepts placentas from women who don’t have HHT, but have an HHT male partner. If you’re expecting you can donate your placenta to HHT research. Help cure this disease in their lifetime.

10/14/2026

Rare diseases don’t feel rare to those who have them. While HHT does not currently have an FDA-approved therapy, the FDA Center for Drug Evaluation and Research is working on increasing research on rare, or orphaned, diseases including HHT.

Tanya Wroblewski, MD of the US Food and Drug Administration is kicking off our afternoon program with a session entitled, “Regulatory Science & Pathways to Drug Approval: Regulatory Landscape & FDA Pathways for HHT Therapeutics”.

10/14/2026

This year, our tagline for is “Where Breakthroughs Set Sail” and that is being made abundantly clear today.

Session 5 is our Clinical Plenary, moderated by Marie Faughnan, MD & Kevin Whitehead, MD. Alnylam, Atavistik Bio, Diagonal Therapeutics, Tectonic, Terremoto, Vaderis, Bevacizumab (TrUST HHT), and RogueTx presented the most current findings and science across the therapeutic pipeline.

10/14/2026

Cure HHT would like to share a new research update:

RogueTx , a new biotechnology company focused on vascular disease, has launched with $58 million in Series A financing to advance RTX-001, an investigational treatment being developed for hereditary hemorrhagic telangiectasia (HHT).

This announcement represents another encouraging sign of the growing scientific and commercial investment in HHT—and another distinct therapeutic approach entering an increasingly active research pipeline.

Read the announcement: https://loom.ly/3KYXAEI

10/13/2026

“I work with multiple biopharma partners. I want to be transparent about that. I am not biased — I want every therapy to be as successful as possible. What I am biased towards is my patients. I want them to have all the care and options they deserve.”

Now: a featured talk on emerging novel therapies for the treatment of HHT from Dr. Hanny Al-Samkari Mass General Brigham Harvard Medical School

Read his (new!) related paper in The Lancet: https://loom.ly/o5j7zMM

10/13/2026

“Doug was always patient-centered, before the term was fashionable. And our families have always felt that way.”

Our opening keynote is underway! We’re thrilled to welcome Doug Marchuk of Duke University School of Medicine to the stage this morning to explore the genetic determinants of HHT—and what they can teach us about the future of HHT research and care.

Address

PO Box 329
Monkton, MD
21111

Opening Hours

Monday	9am - 5pm
Tuesday	9am - 5pm
Wednesday	9am - 5pm
Thursday	9am - 5pm
Friday	9am - 5pm

Telephone

+14103579932

Website

http://www.curehht.org/

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