Category: Rare Disorders

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Conditions and Diseases/Rare Disorders

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Links:

• Cherubs   [rate it] [review it]
  A non-profit support group for the families and medical care providers of children and adults born with Congenital Diaphragmatic Hernia.

• Contact a Family   [rate it] [review it]
  Information about this organization as well as the CaF directory of specific conditions and rare disorders. Also details about the Rare Disorders Alliance - UK.

• Fibrous Dysplasia Support Online   [rate it] [review it]
  For those seeking support and information concerning the rare bone diseases: fibrous dysplasia, McCune Albright Syndrome and Cherubism.

• Human Growth Foundation   [rate it] [review it]
  Information about growth-related disorders through education, research, and advocacy. Member driven organization.

• International Rare Disease Support Network   [rate it] [review it]
  A community providing more than a 1000 different links to support groups for the people of all nations.

• Kindler Syndrome   [rate it] [review it]
  An article and case study of this rare disease. Includes links.

• Lymphangiomatosis and Gorham's Vanishing Bone Disease   [rate it] [review it]
  Provides general informtion and a personal account, including pictures and X-rays. Also offers patient contact and an email discussion group.

• Nomid /Cinca   [rate it] [review it]
  Resource for parents and patients suffering from Neonatal Onset Multi-inflammatory Disease Chronic, or Infantile, Neurologic, Cutaneous and Articular syndrome. Site maintained by patients, parents and friends for their counterparts worldwide. Email support group at eGroups.

• Office of Rare Diseases   [rate it] [review it]
  Information on more than 6000 rare diseases, including current research, publications from scientific and medical journals, completed research, ongoing studies, and patient support groups.

• Tetrahydrobiopterin   [rate it] [review it]
  Information on structure, biosynthesis and pathophysiology of BH4 and tetrahydrobiopterin deficiency.