Annotation: The Hereditary Hemorrhagic Telangiectasia Foundation International (HHT), founded in 1991, fosters exchange of information on this rare genetic blood vessel disorder (also known as Osler-Weber-Rendu syndrome) among patients, physicians, researchers, genetic counselors, organizations, and the public. The foundation raises funds for genetic and clinical research, maintains a registry of affected families, provides individualized information, and supports scholarships, research grants, and annual conferences. Publications include a newsletter and several brochures. Materials are available in Spanish, French, Italian, Dutch, German, and other languages. Services to consumers include inquiry responses, referrals, publications, and reference information.
Keywords: Cardiovascular diseases, Family support services, Fundraising, Genetic disorders, Hereditary diseases, Hereditary hemorrhagic telangiectasia, Information services, Information services, Medical research, Patient identification
