Cherubs «
http://www.cherubs-cdh.org | | A non-profit support group for the families and medical care providers of children and adults born with congenital diaphragmatic hernia. |
Contact a Family «
http://www.cafamily.org.uk | | Information about this organization as well as the caf directory of specific conditions and rare disorders. also details about the rare disorders alliance - uk. |
Fibrous Dysplasia Support Online «
http://members.cox.net/fdsupport/index.html | | For those seeking support and information concerning the rare bone diseases: fibrous dysplasia , mccune albright syndrome and cherubism. |
Human Growth Foundation «
http://www.hgfound.org/ | | Information about growth-related disorders through education , research , and advocacy. member driven organization. |
Information Centre for Rare Diseases and Orphan Drugs «
http://www.raredis.org/modules/news/ | | Offers an internet portal. includes news , forums , rare disease and orphan drug info and registration forms |
Kindler Syndrome «
http://digilander.libero.it/camdic/KINDLER.html | | An article and case study of this rare disease. includes links. |
National Organization for Rare Disorders, Inc. «
http://www.rarediseases.org/ | | 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. |
Nomid /Cinca «
http://pweb.netcom.com/~jkbarton/nomid/Html/nomid_home_page.htm | | 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 suppo |
Office of Rare Diseases «
http://rarediseases.info.nih.gov/ | | Information on more than 6000 rare diseases , including current research , publications from scientific and medical journals , completed research , ongoing studies , and patient support groups. |
Tetrahydrobiopterin «
http://www.bh4.org | | Information on structure , biosynthesis and pathophysiology of bh4 and tetrahydrobiopterin deficiency. |
