Rare Disorders (Subscribe)
Categories
- Agnosia (7)
- Aicardi Syndrome (7)
- Alström Syndrome (3)
- Barth Syndrome (3)
- Cerebrocostomandibular Syndrome (2)
- Cleidocranial Dysplasia (3)
- Cystinosis (8)
- Degos (4)
- Erythromelalgia (3)
- Jacobsen Syndrome (0)
- Melorheostosis (1)
- Moyamoya (7)
- Ollier Disease (1)
- Pemphigoid (1)
- Pemphigus (4)
- Phenylketonuria (9)
- Pierre Robin Syndrome (4)
- Progeria (10)
- Rubinstein-Taybi Syndrome (6)
- Triploidy (3)
- Tyrosinemia (2)
- VACTERL Association (17)
- Wegener's Granulomatosis (9)
Links
Cherubs
A non-profit support group for the families and medical care providers of children and adults born with Congenital Diaphragmatic Hernia.
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.
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.
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
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 information 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.
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.
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.