Directory of Organizations Resources

Home > Health > Conditions and Diseases > Genetic Disorders > Organizations

Subcategories

• Cystic Fibrosis
• Down Syndrome
• Hemochromatosis
• Hemophilia
• Hydrocephalus
• Muscular Dystrophies
• Thalassemia
• Tourette Syndrome
• Williams Syndrome

Resources in This Category

• Australian MPS & Related Diseases Society

  http://www.mpssociety.org.au/
  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.

• Canadian Gene Cure Foundation

  http://www.genecure.ca/
  The CGCF supports excellence in core human genetics research and aims to raise funds to enable scientists to discover cures and treatments for genetic disorders. Find details about the programs and events, and contact information.

• Dana's Angels Research Trust

  http://www.danasangels.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.

• Genetic Alliance Group

  http://www.geneticalliance.org.uk/
  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

  http://www.hdfoundation.org/
  Information about this non profit organization, news, newsletters, recommended reading and contact details.

• Hereditary Hemorrhagic Telangiectasia Foundation International, Inc.

  http://curehht.org/
  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.

• Lysosomal Diseases New Zealand

  http://www.ldnz.org.nz/
  Information, support and advocacy for families affected by Lysosomal Storage Diseases, a group of rare genetic diseases.

• Telangiectasia Self Help Group

  http://www.telangiectasia.co.uk/
  Provides several factsheets and a newsletter.

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• Home > Health > Organizations > Conditions and Diseases

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