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

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/

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/

Kindler Syndrome
- An article and case study of this rare disease. Includes links.
- http://digilander.libero.it/camdic/KINDLER.html

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

Tetrahydrobiopterin
- Information on structure, biosynthesis and pathophysiology of BH4 and tetrahydrobiopterin deficiency.
- http://www.bh4.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 suppo
- http://pweb.netcom.com/~jkbarton/nomid/Html/nomid_home_page.htm

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

Human Growth Foundation
- Information about growth-related disorders through education, research, and advocacy. Member driven organization.
- http://www.hgfound.org/

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