Directory Sites

  • Cherubs

    A non-profit support group for the families and medical care providers of children and adults born with Congenital Diaphragmatic Hernia.

    www.cherubs-cdh.org

  • 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.

    www.rarediseases.org

  • Human Growth Foundation

    Information about growth-related disorders through education, research, and advocacy. Member driven organization.

    www.hgfound.org

  • 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.

    www.cafamily.org.uk

  • 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.

    pweb.netcom.com

  • Tetrahydrobiopterin

    Information on structure, biosynthesis and pathophysiology of BH4 and tetrahydrobiopterin deficiency.

    www.bh4.org

  • Fibrous Dysplasia Support Online

    For those seeking support and information concerning the rare bone diseases: fibrous dysplasia, McCune Albright Syndrome and Cherubism.

    members.cox.net

  • Kindler Syndrome

    An article and case study of this rare disease. Includes links.

    digilander.libero.it

  • 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.

    rarediseases.info.nih.gov

  • Information Centre for Rare Diseases and Orphan Drugs

    Offers an Internet portal. Includes news, forums, rare disease and orphan drug info and registration forms

    www.raredis.org

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