Cherubs A non-profit support group for the families and medical care providers of children and adults born with Congenital Diaphragmatic Hernia.
http://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.
http://www.cafamily.org.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.
http://www.eurordis.org
Fibrous Dysplasia Support Online For those seeking support and information concerning the rare bone diseases: fibrous dysplasia, McCune Albright Syndrome and Cherubism.
http://members.cox.net/fdsupport/index.html
Human Growth Foundation Information about growth-related disorders through education, research, and advocacy. Member driven organization.
http://www.hgfound.org/
Information Centre for Rare Diseases and Orphan Drugs Offers an Internet portal. Includes news, forums, rare disease and orphan drug info and registration forms
http://www.raredis.org/modules/news/
Kindler Syndrome An article and case study of this rare disease. Includes links.
http://digilander.libero.it/camdic/KINDLER.html
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.
http://www.rarediseases.org/
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.
http://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.
http://rarediseases.info.nih.gov/
Tetrahydrobiopterin Information on structure, biosynthesis and pathophysiology of BH4 and tetrahydrobiopterin deficiency.
http://www.bh4.org
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