The next milestone is an FDA-approved treatment for HHT. The goal is a cure.
For more than 35 years, Cure HHT has turned the needs of this community into stronger science, better standards of care, expert Centers, federal investment, and the research infrastructure that therapeutic development depends on.
What we have proven
A record, not a promise
Cure HHT was founded in 1991 by patients, families, and physicians who decided that a disease affecting one in 4,000 people deserved more than it was getting. What follows is what that decision built.
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Expert care, built from nothing
One HHT Center of Excellence became more than 55 worldwide. Cure HHT accredits them, convenes them, and holds them to the International HHT Guidelines.
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A standard of care
International guidelines now exist for diagnosis, screening, and management across organ systems, giving clinicians who see HHT once a decade something authoritative to work from.
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A pipeline that did not exist
Between 2018 and 2022 there were three therapies in the HHT pipeline. There are 15 today, with programs in clinical development.
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Federal recognition
Advocacy by this community secured HHT-specific eligibility in the FY2026 Peer Reviewed Medical Research Program and federal investment in HHT Centers. Representatives signed on after hearing directly from families.
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Research infrastructure
CHORUS, the Biobank, HHT Connect, and the Clinical Trial Network exist so that the next study does not have to start from zero.
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Clinicians who know what to look for
A free continuing education program puts HHT in front of providers who would otherwise meet it for the first time in a patient with a 27-year diagnostic delay.
Where we are going
Better care now, and a treatment that does not exist yet
The Research Roadmap sets three directions at once. Improve diagnosis and care for people living with HHT today. Strengthen the data, samples, and trial-ready sites that research depends on. Pursue more than one therapeutic path, because rare disease programs fail and a single path is not a strategy.
There is no FDA-approved treatment for HHT. That is the gap this work is aimed at, and it is close enough now to name.
Everything above is checkable. The strategy, the money, and the people responsible for both are published.