Surf these sites: ATR-X Syndrome Egroup -- This is a support egroup for families affected by "Alpha Thalassemia Mental Retardation Syndrome." Campylobacter Information -- Frequently asked questions about Campylobacter from The Centers for Disease Control and Prevention. Canadian Organization for Rare Disorders -- Committed to the enhancement of the lives of persons affected by rare disorders. Includes history of CORD and informational support network. Chromosome Deletion Outreach -- CDO is a non-profit organization providing support & information to families affected by any type of rare chromosome disorder. Cystinosis Research Network -- Their mission is to raise funds aimed at research to treat and cure cystinosis, and to raise awareness within the cystinosis community. Depersonalisation Support Forum -- Sensation of feeling as if living in a dream, feeling of nothing being real, feeling detached from oneself, yet remaining aware this is just a sensation. Healthlinkusa - Rare Disease links -- A wide range of rare disease information links provided by Healthlinkusa. Human Growth Foundation -- Information about growth-related disorders through education, research, and advocacy. Member driven organization. Jim O''Donnell''s RSD/CRPS Site -- This site contains information and comfort for those experiencing RSD/CPRS. Lysinuric Protein Intolerance Support eGroup -- A support eGroup available to anyone interested in making friends, sharing information, and providing support for persons affected by "Lysinuric Protein Intolerance." Meniere''s Disease -- Site providing information, treatment options, support, and links for Meniere''s Disease. NORD -- National Organization for Rare Diseases National Institutes of Health, Office of Rare Diseases -- Here you can find information on more than 6000 rare diseases, including current research, publications from scientific and medical journals, completed research, ongoing studies, and patient support groups. National PKU News -- Site includes news and information about phenylketonuria, a rare inherited metabolic disease. National Rosacea Society -- Rosacea is a chronic, acne-like condition of the facial skin. This site describes the causes and treatment of this disorder. Ollier/Maffucci Self Help Group -- A nonprofit organization for people affected Ollier’s Disease, a rare disorder of bone development and Maffucci Syndrome, a rare congenital disorder characterized by multiple benign skin and bone lesions. Opitz G/BBB Family Network -- Support network for family members whose children have Opitz-G/BBB syndrome. Pediatric Primary Immune Deficiency -- This site deals with the diseases associated with congenital and inherited T cell and/or B cell immune deficiency. Mostly focusing on the pediatric population. Has a listserv for parents to discuss related issues. Pierre Robin Network -- A place to find support and tips on Pierre Robin Syndrome. We network together to make our children''s lives more comfortable. We also encourage adults with PRS and professionals to join us. Rare Disease Support Community -- A network of rare disease support eGroups, available to anyone interested in making friends, sharing information and providing support for persons affected by rare disorders. Rare Disease Support Egroups -- Provides a directory of support egroups for people affected by rare diseases. Rett Language -- One family''s experience with Rett Syndrome, Applied Behavioral Analysis and Discrete Trial Teaching. The Fragile WEB Site -- Infomation on Jacobsen syndrome, the chromosome deletion syndrome, for the families and carers of JS patients. Reference databaase, family support groups and clinical information. The National Pemphigus Foundation -- Nonprofit organization providing information about Pemphigus and treatment options.
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