The journey to a cure takes all of us.
Patients and families. Physicians and scientists. Advocates, fundraisers, volunteers, partners, and people who decided HHT deserved more attention than it was getting. There are several ways to move this work forward. Find the one that fits what you have to give.
Ways to take part
Where you come in
Some of this takes an afternoon. Some of it takes a year. All of it moves the same work forward.
Raise awareness
With 80% of people with HHT undiagnosed, awareness is not decoration. It is how someone recognizes their own family in a description and asks a doctor the right question.
Join the community
Conferences, webinars, and events where the tissues in every bag and the backup shirt do not need explaining.
Advocate
Federal investment in HHT care and research did not appear on its own. It came from families sitting across a desk from decision-makers.
Share your story
Published with first names only, and nothing goes out without your review. It reaches families still waiting for a diagnosis.
Fundraise
Birthdays, races, and community events raise money and raise awareness in the same motion.
Participate in research
Trials, registries, surveys, and sample donation. Research cannot move without people who live with the disease.
Partnerships
For companies, institutions, foundations, and newsrooms bringing expertise, reach, or investment to the same problem.
Wear it
Shirts, sweatshirts, and accessories that start the conversation for you. Proceeds support HHT research and care.