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Directory Sites
Lysosomal Diseases New Zealand
Information, support and advocacy for families affected by Lysosomal Storage Diseases, a group of rare genetic diseases.
www.ldnz.org.nz
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.
www.gig.org.uk
Information about this non profit organization, news, newsletters, recommended reading and contact details.
www.hdfoundation.org
Australian MPS & Related Diseases Society
Informs and support those affected, directly or indirectly by an mucopolysaccharide or related disease. Offers information regarding each disease, a discussion forum, a picture gallery and news of events.
www.mpssociety.org.au
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.
www.hht.org
American Society of Genetic Disorders
Informs health professionals, legislators, health policy makers, and the general public about all aspects of human genetics.
www.ashg.org
Information from this charitable organization on Niemann-Pick Type C disease and how individuals can contribute funds for research for this fatal childhood disease.
www.danasangels.org
A non-profit, all-volunteer organization dedicated to supporting research for, and the families of, those suffering from Mucopolysaccharidosis, or MPS. Find disease info, articles and links.
www.ryanfoundation.org