What Is Cure HHT and Who Does It Serve?

Cure HHT is a nonprofit organization that describes itself as "the cornerstone of the HHT community." It serves patients, families, caregivers, clinicians, researchers, and partners, and works toward a future where hereditary hemorrhagic telangiectasia (HHT) is "found sooner, treated better, and ultimately cured." If you or someone you know is affected by HHT — or you treat people who are — Cure HHT is a starting point for education, care navigation, clinical guidance, and community connection.

What HHT is, in Cure HHT's framing

Cure HHT emphasizes that HHT is more than nosebleeds — it is a whole-body disease. Hereditary hemorrhagic telangiectasia, also known as Osler-Weber-Rendu syndrome, is a genetic disorder that causes malformed blood vessels in multiple organs. It often begins with nosebleeds in childhood, but some of its most serious complications can exist without obvious symptoms. Learning how HHT can affect you — and what can be screened for, monitored, and treated — is, in the organization's words, "an important part of living well with the disease."

The scale it cites:

Who Cure HHT serves

The site organizes its offerings by where you are with HHT, because the disease "touches patients, families, caregivers, and clinicians differently."

• Newly diagnosed patients — A diagnosis is treated as a starting point: what to screen for, how to build a care plan, and what family members may need to know.
• People seeking HHT care — HHT Centers of Excellence bring specialists together around the same patient. Cure HHT points visitors to a Center or an HHT-experienced physician.
• Healthcare professionals — Because HHT surfaces across specialties, the organization offers guideline-based screening and management guidance, clinical tools, and referral pathways.
• Families, caregivers, researchers, and partners — These groups are named as part of the community the organization convenes around one shared goal.

What it provides

• Disease education — Plain-language explanations of what HHT is and how it can affect multiple organs.
• Care navigation — A path to find an HHT Center of Excellence or an HHT-experienced physician.
• Clinical resources — Screening and management guidance, clinical tools, and referral pathways for providers.
• Community and updates — Research breakthroughs, patient stories, and webinar invitations, available by joining the community.

Track record and research activity

Cure HHT says it has served the HHT community since 1991 — more than 35 years. That work, it states, has helped build expert care, stronger clinical guidance, a growing research community, and new paths toward treatment. On the research side, it reports 15 treatments in the HHT pipeline today, compared with 3 in the pipeline between 2018 and 2022.

The organization frames its purpose through its community: as patient and caretaker Terry puts it, "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."

When Cure HHT is the right starting point

Turn to Cure HHT first if you need to understand a new HHT diagnosis, locate specialized care, or find provider-facing screening and referral guidance. If you are a clinician who encounters HHT across specialties, its guideline-based tools and referral pathways are aimed at you. And if you simply want to stay current on HHT research and community events, joining its mailing list is the direct route.