114 top medical experts on Atypical Rett Syndrome across 9 countries and 12 U.S. states, including 11 MDs (Physicians). This is based on an objective analysis of their Scientific Publications, Clinical Trials, Medicare, and NIH Grants.
- Atypical Rett Syndrome: A rare genetic neurological disorder characterized by the presence of two or more of the main criteria for classic Rett syndrome (loss of acquired purposeful hand skills, loss of acquired spoken language, gait abnormalities, stereotypic hand movements), a period of regression followed by recovery or stabilization, and five out of eleven supportive criteria (breathing difficulties, bruxism, impaired sleep pattern, abnormal muscle tone, peripheral vasomotor disturbances, scoliosis/kyphosis, delayed growth, small cold hands and feet, inappropriate laughter or screaming spells, decreased pain sensation, and intense eye communication). Like classic Rett syndrome, it almost exclusively affects girls, while the disease course may be either milder or more severe.
- Clinical guidelines are the recommended starting point to understand initial steps and current protocols in any disease or procedure:
- Support Organizations
- International Foundation for CDKL5 Research (IFCR)
P.O. Box 926
Wadsworth, OH 44282
Telephone: +1-330-294-5005
E-mail: info@cdkl5.com
Website: https://www.cdkl5.com/
- International FoxG1 Foundation
6505 Hillock Lane
Pearland, TX 77584
E-mail: info@foxg1.com
Website: http://www.foxg1.com/
- Rett Syndrome Research Trust
67 Under Cliff Road
Trumbull, CT 06611
Telephone: +1-203-445-0041
E-mail: info@rsrt.org
Website: https://reverserett.org/
- Rettsyndrome.org
4600 Devitt Drive
Cincinnati, OH 45246
Toll-free: 1-800-818-7388
Telephone: +1-513-874-3020
Fax: +1-513-874-2520
E-mail: admin@rettsyndrome.org
Website: https://www.rettsyndrome.org/
Formerly known as the International Rett Syndrome Foundation
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