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Health Board Conditions and Diseases/Rare Disorders

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  • 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.
  • Fibrosing Mediastinitis
    The least common, but most severe, late complication of histoplasmosis. Educational and research information. Includes interviews, patient stories, and a community forum.
  • Human Growth Foundation
    Information about growth-related disorders through education, research, and advocacy. Member driven organization.
  • Kindler Syndrome
    An article and case study of this rare disease. Includes links.
  • 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.
  • Nomid /Cinca
    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.
  • Tetrahydrobiopterin
    Information on structure, biosynthesis and pathophysiology of BH4 and tetrahydrobiopterin deficiency.

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