Syndromes
Angleman Syndrome Clinical features of Angleman's Syndrome and many links)
Angelman Syndrome from Family Village
ANGELMAN For caregivers of people with Angelman syndrome.Subscription address: MAJORDOMO@MORNINGSTAR.COM Instructions: In the body of your email, send the message, SUBSCRIBE ANGELMAN For the digest: Send this message to the above address: subscribe angleman-digest Web site: http://asclepius.com/angel Listowner: Ashley Burns ashley@morningstar.com Greg Burns gdburns@morningstar.com
Arnold-Chiari malformation( Chiari malformation (also called Arnold-Chiari malformation) is a rare congenital anomaly in which two parts of the brain, the brainstem and the cerebellum, are longer than normal and protrude down into the spinal canal. Many links!)
Carolina Fragile X Project (a series of studies examining the impact of fragile X syndrome (FXS) on individuals, families & the agencies that serve them.)
Fragile X Association of Southern California
Fragile X Listserv (This is a virtual support and information exchange group for all interested parties, including parents, other family members, educators, and medical professionals. We are grateful to Emory University for sponsoring this listserv. FRAXA started the listserv in 1995 to serve the entire fragile X community. Send mail to LISTSERV@LISTSERV.CC.EMORY.EDUwith the following command in the body of your e-mail message: SUBSCRIBE FRAGILEX-L)
Fragile X Research Foundation of Canada
Fragile X Syndrome from Family Village
Fragile X Syndrome: Diagnostic and Carrier Testing (Policy Statement: American College of Medical Genetics)
Fraxa Research Foundation (FRAXA was founded in 1994 by three parents of children with fragile X syndrome, Katie Clapp, Michael Tranfaglia, MD, and Kathy May, to support scientific research aimed at finding a treatment and a cure for fragile X syndrome. Fragile X research is drastically underfunded, considering its high prevalence, prospects for a cure, and the promise that this research holds for advancing understanding of other disorders like autism, Alzheimer's disease, and X-linked mental retardation.)
Healthlink USA Angelman Syndrome
Healthlink USA Arnold Chiari Malformation
Healthlink USA Fragile X Syndrome
Healthlink USA Smith-magenis Syndrome
Healthlink USA Tourette Syndrome
International Rett Syndrome Association
The National Fragile X Foundation (The National Fragile X Foundation unites the fragile X community to Enrich lives through educational and emotional support, Promote public and professional awareness, and Advance research toward improved treatments and a cure for fragile X syndrome.)
OMIM™Online Mendelian Inheritance in Man (tons of citations for fragile x)
POV-TWITCH Members include mothers of children with tourette syndrome, or adults who have spent a lifetime facing those issues. Medical doctors in the subject of tourette syndrome and people with advanced degrees in allied fields are also members of pov-twitch. Subscription address: MAJORDOMO@IGC.ORG Instructions: In the body of your email, send the message, SUBSCRIBE POV-TWITCH Digest: Write the address above with the message, subscribe pov-twitch-digest Listowner: Jackie Aron owner-pov-twitch@igc.org
The Prader-Willi Syndrome Association
Prader-Willi Syndrome (Major Criteria, Minor Criteria, Supportive Findings, Many many links!)
Prader-Willi at Yahoo Groups (This is a list for family and friends of people with Prader-Willi Syndrome. This list is to discuss the good and the bad of Prader-Willi and to help bring us together for sharing info or making friends. )
PRISMS Parents and Researchers Interested in Smith-Magenis Syndrome
Rett Syndrome Research Foundation
Rett Syndrome What is it? (Diagnostic criteria, supportive criteria, many links!)
The Tourette Syndrome Chapter Webring
Tourette Syndrome.com Home of Tourette Syndrome Online
Tourettes Syndrome: DIAGNOSTIC CRITERIA FOR TIC DISORDERS (Tons of great links!)
Tourette Syndrome "Plus" (On this site you will find up-to-date, comprehensive information on a number of childhood-onset conditions, including diagnosis, treatment, parenting, and school-related issues and tips. Learn the signs and symptoms of various conditions and what you can do to help. Much of the material on this site will also apply to adults with these conditions.Major Sections: *TOURETTE *OBSESSIVE-COMPULSIVE *ATTENTION-DEFICIT *AUTISM SPECTRUM *MOOD DISORDERS *"RAGE ATTACKS" *PANDAS ("strep") *BEHAVIOR PROBLEMS *SCHOOL DAZE? *ADVOCACY )
