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  • National Organization for Rare Disorders, Inc.   - Information about NORD, its programs, special events and the variety of services offered. Includes a rare disease, organization and orphan drug database. Diseases are listed alphabetically for easy searching.

  • Cherubs - A non-profit support group for the families and medical care providers of children and adults born with Congenital Diaphragmatic Hernia.
  • Contact a Family - Information about this organization as well as the CaF directory of specific conditions and rare disorders. Also details about the Rare Disorders Alliance - UK.
  • European Organisation for Rare Diseases - Alliance of patient associations dedicated to improving the quality of life of all people living with rare diseases in Europe.
  • Fibrous Dysplasia Support Online - For those seeking support and information concerning the rare bone diseases: fibrous dysplasia, McCune Albright Syndrome and Cherubism.
  • Human Growth Foundation - Information about growth-related disorders through education, research, and advocacy. Member driven organization.
  • Information Centre for Rare Diseases and Orphan Drugs - Offers an Internet portal. Includes news, forums, rare disease and orphan drug information and registration forms
  • Kindler Syndrome - An article and case study of this rare disease. Includes links.
  • Office of Rare Diseases - Information on more than 6000 rare diseases, including current research, publications from scientific and medical journals, completed research, ongoing studies, and patient support groups.

Other links and resources here.