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Home : Diseases and Conditions : Genetic Disorders : Organizations


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.
Genetic Interest 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.
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.
International Society for Mannosidosis & Related Diseases
a nonprofit organization advocating for families and caregivers.
IOGA: International Organization of Glutaric Acidemia
Information about the organization, their services and about the disease. Including events, newsletter, FAQs, message board and links.
Lowe Syndrome Association
Information about this disease and the international organization that deals with it.
Lysosomal Diseases New Zealand
Information, support and advocacy for families affected by Lysosomal Storage Diseases, a group of rare genetic diseases.
National Association for Psuedoxanthoma Elasticum (NAPE)
support group offering information on the disorder, and a membership-based newsletter.
National Dysautonomia Research Foundation
offers information and support for people affected by disorders of the autonomic nervous system.
National Society of Genetic Counselors (NSGC)
a leading voice, authority, and advocate for the genetic counseling profession.
Sotos Syndrome Support Association of Canada
Provides educational and emotional support, and current information. English and French.
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