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Home / Health / Conditions and Diseases / Rare Disorders
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Web Sites
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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.
www.cherubs-cdh.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
- 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/fdsupport/index.html
- Human Growth Foundation - Information about growth-related disorders through education, research, and advocacy. Member driven organization.
www.hgfound.org
- International Rare Disease Support Network - A community providing more than a 1000 different links to support groups for the people of all nations.
www.raredisorders.com
- Kindler Syndrome - An article and case study of this rare disease. Includes links.
digilander.iol.it/camdic/KINDLER.html
- 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/~jkbarton/nomid/Html/nomid_home_page.htm
- 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/ord
- Proximal Femaral Focal Deficiency - This website about Michael was done so that other PFFD families can see his photos and doctors can view his xrays.
www.tum.pwp.blueyonder.co.uk
- Tetrahydrobiopterin Home Page - Information on structure, biosynthesis and pathophysiology of BH4 - database of BH4 deficiencies - database of mutations - screening for BH4 deficiency. These are just a few of the topics discussed.
www.bh4.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
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