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Health/Conditions_and_Diseases/Genetic_Disorders/Organizations

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Organizations resources

Genetic Alliance Group

Information about this UK umbrella group of organizations working together to improve services for people with genetic disorders. A notice board, education, services and links are provided.

Hereditary Disease Foundation

Information about this non profit organization, news, newsletters, recommended reading and contact details.

Australian MPS & Related Diseases Society

Informs and support those affected, directly or indirectly by a mucopolysaccharide or related disease. Offers information regarding each disease, a discussion forum, a picture gallery and news of events.

Hereditary Hemorrhagic Telangiectasia Foundation International, Inc.

Provides patients, families, and doctors with educational information and fosters an exchange of information about the diagnosis and treatment of HHT between patients, physicians, researchers, genetic counselors, agencies, educators, and the general public.

Dana's Angels Research Trust

Information from this charitable organization on Niemann-Pick Type C disease and how individuals can contribute funds for research for this fatal childhood disease.

Telangiectasia Self Help Group

Provides several factsheets and a newsletter.