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

International Rare Disease Support Network  
   A community providing more than a 1000 different links to support groups for the people of all nations.
   http://www.raredisorders.com

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

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

Tetrahydrobiopterin  
   Information on structure, biosynthesis and pathophysiology of BH4 and tetrahydrobiopterin deficiency.
   http://www.bh4.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

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

Lymphangiomatosis and Gorham's Vanishing Bone Disease  
   Provides general information and a personal account, including pictures and X-rays. Also offers patient contact and an email discussion group.
   http://www.gorhams.dk

Fibrosing Mediastinitis  
   The least common, but most severe, late complication of histoplasmosis. Educational and research information. Includes interviews, patient stories, and a community forum.
   http://www.fibrosingmediastinitis.com

Mascot McCune Allbright Syndrome Communication Online Town  
   Collects all the brand new studies in McCune syndrome and perform a FAQ session to explain what the disease is. It is a sharing experience place for ill people.
   http://www.mascot.altervista.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

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/