Search Results: MCH Organizations

Annotation: The Hereditary Disease Foundation (HDF) conducts basic biomedical research in hereditary disease, primarily Huntington's disease and related neurogenetics illnesses. The foundation's research activities are accomplished through grant programs, workshops, and postdoctoral fellowship programs, with the use of biological specimen banks at Harvard University and the University of California, Los Angeles. In 1997, the Foundation launched the Cure Huntington's Disease Initiative. Services to consumers include referrals, reference information, and publications. HDF provides workshop information and reports and publishes a newsletter. The foundation also sponsors conferences.

Keywords: hereditary diseases,, Huntingtons disease, Nervous system diseases

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