Most people with HHT have never met another person who has it.
Conferences, webinars, and two moderated Facebook groups exist to change that. Some are clinical. Some are simply a room full of people who already understand.
Gatherings
Everything coming up
Filter by format or by who an event is for, or search by name. Featured events stay at the front of the list.
Between events
Find your people on Facebook
Conferences happen once a year. The groups run every day. Cure HHT moderates two Facebook groups where members ask about treatment, compare notes on finding care, and talk to people who do not need HHT explained to them first. Both are free to join.
HHT Awareness
A moderated space for people living with HHT and the families around them. Questions about symptoms, treatment, and getting taken seriously by a care team are all normal here.
HHT International
The same community with a wider reach, for members outside the United States and anyone who wants to compare how HHT care works in other countries.
Facebook groups are run by people, not clinicians. Nothing posted in them is medical advice, and anything that affects your care is worth raising with an HHT center.
Outside the United States
HHT organizations in other countries
If you are outside the United States, one of these is often the closest help to you. The first list is our affiliated organization. The second is independent: Cure HHT does not run or oversee those organizations, and we cannot answer for their information or services.
Affiliated with Cure HHT
Independent groups, not overseen by Cure HHT
Germany
Morbus-Osler-Selbsthilfe
Japan
HHT Japan