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.

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

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.

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

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.

Provides several factsheets and a newsletter.