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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.
http://www.cherubs-cdh.org
Cherubs-cdh.org  ~   Site Info   Whois   Trace Route   RBL Check  
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/
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Human Growth Foundation
Information about growth-related disorders through education, research, and advocacy. Member driven organization.
http://www.hgfound.org/
Hgfound.org  ~   Site Info   Whois   Trace Route   RBL Check  
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
Cafamily.org.uk  ~   Site Info   Whois   Trace Route   RBL Check  
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
Cox.net  ~   Site Info   Whois   Trace Route   RBL Check  
Kindler Syndrome
An article and case study of this rare disease. Includes links.
http://digilander.libero.it/camdic/KINDLER.html
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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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Information Centre for Rare Diseases and Orphan Drugs
Offers an Internet portal. Includes news, forums, rare disease and orphan drug information and registration forms
http://www.raredis.org/modules/news/
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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
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