» 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/
Sites:
» 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/
» Kindler Syndrome
An article and case study of this rare disease. Includes links.
http://digilander.libero.it/camdic/KINDLER.html
» 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/
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Last Updated: 2010-08-16 04:37:57
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