Research Priorities

HHT Outcomes Registry


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An HHT longitudinal registry will include anonymous (privacy protected) clinical, radiographic (X-ray, CT scan, MRI scan), genetic, and treatment information on all HHT patients in North America; Determine who will benefit from each type of therapy (targeted therapy), by understanding risks and risk factors; Measure outcomes on therapies and also in untreated disease to aid in studying HHT natural history to determine research priorities. READ MORE

Innovative HHT Research

Discover new therapies to regress or prevent AVMs in part by piggybacking on drug development and other novel approaches for prevalent diseases (i.e. Cancer, heart disease).

Advancing Patient Care Strategies

Set new standards for HHT care through clinical guidelines, based on recent therapies and research through an evidence based process; Provide access to expert HHT care via HHT Centers of Excellence; Educate the public and the medical community about HHT; Diagnose unrecognized HHT.