Fragle X Syndrome
Fragile X is one of the most
common single-gene diseases & the leading form of autism of known cause.
American
College of Medical Genetics issued a policy statement
for physicians which provides guidelines for when a patient ought to be
tested for fragile X.
Conquer Fragile
X
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.
Fragile X Syndrome
Research Foundation
FRAXA Research Foundation(English,
German, Japanese, Spanish) - 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.
GeneClinicsThis
University of Washington publication has comprehensive information about
fragile X for all audiences.
National Center
for Biotechnology Information allows you to search public
databases including OMIM, GenBank, and PubMed for the most up-to-date scientific
information and publications on fragile X.
OMIM
Database OMIM (Online Medelian Inheritance in Man) gives
a detailed scientific information, with extensive references (periodically
updated).
Society
for Neuroscience Brain Briefings gives a nice explanation
of research approaches aimed at treatment, for a general audience.
Treatment
Research Directions - Report July 2002 In November 2001,
the National Institute of Mental Health convened a workshop to identify
the most promising research directions which should be emphasized to develop
effective treatments. The meeting was organized by Dr. Benedetto Vitiello
and Dr. Edgardo Menvielle of NIMH, and the participants were Don Bailey,
Elizabeth Berry-Kravis, Mark Bear, Linda Crnic, Bill Greenough, Paul Hagerman,
Walter Kaufmann, Richard Paylor, Alan Reiss, and, from FRAXA, Katie Clapp
and Michael Tranfaglia.
United States - 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. |
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Created
& Designed by Judi Coats (Updated on January 7th, 2006)