Rett Syndrome
Rett Syndrome is a neurological disorder that is classified as an autism spectrum disorder by the DSM-IV. It is found overwhelmingly in girls. In 1964, Dr. Andreas Rett first described Rett Syndrome. Development appears normal until sixteen to eighteen months of age. It is cased by a defective regulatory, methyl CpG binding protein 2, (MECP2 gene) found on the X chromosome. Temporary regression follows during which the child loses communication skills and purposeful use of the hands. Then stereotyped hand movements, gait disturbances and slowing rate of head growth become apparent.
Associations/Groups:
International Rett Syndrome Foundation (IRSF)
Offers information, family support, and research programs.
4600 Devitt DR
Cincinatti, OH 45246
Toll Free: 800-818-7388
Contact form: admin@rettsyndrome.org
Rett Syndrome Angels
Formerly Rett Syndrome Association of Massachusetts (RSAM). It is a non-profit organization that was founded by parents.
217 South Street
Waltham, Massachusetts 02453
Contact form: rsaangels.org/contact-us/
Rett Syndrome Program at Children’s Hospital Boston
Only specialist Rett syndrome program in New England.
Fegan 11
300 Longwood Avenue
Boston, MA 02115
Contact: Amy Raeder, MEd – Patient & Family Educator
Phone: 617-355-8994
RettSyndrome.org Massachusetts Resources
Your state Resource Representative provides emotional support, information and resources to families affected by Rett syndrome.
Contact:Samantha Brant – Family and Community Engagement Manager
Phone: 508-362-2220
Email: RettResearch@childrens.harvard.edu
Other Information:
Rett Syndrome Treatment and Prognosis
K12 Academics: Depending of severity of psychomotor, cognitive impairment, 2-15% of patients may achieve a normal level of cognitive and adaptive functioning through various rehabilitation methods. Marriage, success in achieving employment, independent residence can be achieved during adulthood. There is no current cure for Rett disorder.
Rett Syndrome
National Institute of Neurological Disorders and Stroke: Any racial or ethnic group can experience Rett syndrome. Rett syndrome most commonly affects girls, although boys are also (rarely) affected. Boys are usually more severely affected than girls.
Rett Syndrome
National Organization for Rare Diseases: Rett syndrome is a progressive neurodevelopmental disorder that almost exclusively affects females. Only in rare cases are males affected. Infants with Rett syndrome generally develop normally for about 7 to 18 months after birth.
Fact Sheet last updated on: 8/27/2024
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