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The information contained in the Organizational Database (ODB) is provided for informational purposes only. There is no implied endorsement by NORD. NORD does not promote or endorse participation in any specific organization. The information is subject to change without notice. Every effort is made to ensure that the details for each entry are as current as possible.


International Rett Syndrome Foundation



Address

4600 Devitt Dr.
Cincinnati, OH 45246 USA

800 Number

8008187388

Email Address

admin@rettsyndrome.org

Description

The International Rett Syndrome Foundation is a non-profit, voluntary organization dedicated to three missions: research, advocacy and family support. Rett syndrome, a rare genetic neurological disorder that affects primarily females, is characterized by normal early development in the first year of life followed by a regression, which leads to severe handicaps by the age of three years. Clinical symptoms include loss of purposeful hand use, stereotyped hand movements, decelerated head growth, dyspraxia, irregular breathing and seizures. IRSF funds biomedical, clinical and therapeutic research; engages in patient advocacy; promotes family and professional education; provides referrals to support groups, genetic counseling, and other services; and promotes legislation beneficial to affected individuals and families. The foundation's mission includes supporting and promoting research into the prevention, control, and cure of the disorder; increase public awareness; and providing emotional support for affected families. The International Rett Syndrome Foundation engages in patient advocacy; promotes family and professional education; provides referrals to support groups, genetic counseling, and other services; and promotes legislation beneficial to affected individuals and families. The foundation also provides a variety of educational and support information through its directory, quarterly newsletters, books, audiovisual materials, brochures, and fliers.

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