Rettsyndrome.org

What is Rett syndrome

WEBRett syndrome is a rare genetic neurological disorder that occurs almost exclusively in girls, more rarely in boys, and leads to severe impairments, affecting nearly every aspect of …

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URL: https://www.rettsyndrome.org/about-rett-syndrome/what-is-rett-syndrome/

A First for Rett: FDA Approves Trofinetide for Treatment of Rett

WEBThis first-ever treatment is approved for individuals with Rett syndrome. (Updated March 19, 2023) On March 10, 2023, Acadia Pharmaceuticals announced that …

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Taysha Rett Syndrome Community Update

WEBTSHA-102 is designed to deliver a functional MECP2 gene to the brain in patients with Rett syndrome using a novel. technology platform, called miRARE, …

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Care & Development

WEBRett syndrome Handbook. The Rett syndrome Handbook is a must-read for every family and an excellent chapter reference for the specialists helping your child. Download or …

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Rett Syndrome Awareness Month

WEBWays you can go ALL IN to raise awareness this October. Rett Syndrome is a rare disease and though we’ve made great strides, many still don’t know it exists. But together, we …

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International Rett Syndrome Foundation’s New Center of …

WEBWe are committed to advancing and expanding our community’s access to best-in-class Rett syndrome care. Toward that end, we are designating 15 partner clinics across the U.S. to our Center of Excellence Network.

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Rett Research Ready

WEBmyRett Trial Finder provides clear and easy-to-search information related to all Rett syndrome clinical trials listed on clinicaltrials.gov.The tool will be updated with new …

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RETT SYNDROME: Primary Care Guidelines

WEB• Patients with Rett syndrome should be seen for regular wellness checkups, screenings and immunizations (especially flu vaccinations)*. • Inform staff that extra time will be …

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Family 2 Family Health Information and Education Center (MS F2F)

WEBVisit Family 2 Family Health Information and Education Center Website 1-866-883-4474 The Mississippi Family 2 Family Health Information and Education …

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Natural History Study

WEBThe Rett Syndrome Natural History Study will continue until July 31, 2021. Here is some information about participation: Participants – Both males and females with Rett …

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Hive Networks & IRSF Partner to Advance Research and Treatment …

WEBHive Networks today announced a multi-year partnership with the International Rett Syndrome Foundation to provide a digital health platform to support …

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Rett Syndrome Clinics

WEBRett Syndrome ClinicChristopher Beatty, MD700 Children’s Dr., Columbus, OH 43205(614) 722-4625. Pennsylvania. The Children’s Hospital of Philadelphia. Rett Syndrome …

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Neuro-Habilitation Research Susan A. Rose, PhD, Albert …

WEBNeuro-Habilitation Research . Susan A. Rose, PhD, Albert Einstein College of Medicine . The Research . Dr. Rose is leading research to better understand and assess learning …

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Private Health Insurance Premium Program (PHIP)

WEBJuly 26, 2019. Visit Private Health Insurance Premium Program (PHIP) Website. 1-800-977-6740. PHIP pays for of private medical insurance and MaineCare would act as a …

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Kansas Special Health Care Needs (SHCN) Program

WEBVisit Kansas Special Health Care Needs Program Website 1-785-296-1313 The Kansas Special Health Care Needs (SHCN) Program SHCN provides specialized medical services to infants, children and youth up to age 21 who have eligible medical conditions. Services may include diagnostic evaluations, treatment services or care …

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Kaileigh Mulligan Waiver

WEBJuly 23, 2019. Visit Kaileigh Mulligan Waiver Website. Enrollment Center 1-800-841-2900. The Kaileigh Mulligan Program provides MassHealth services and benefits to certain …

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RettEd: Walking and Rett Syndrome feat. Dr. Meir Lotan

WEBDr. Meir Lotan is studying the effectiveness of home-based programs to enhance the functional abilities of girls with Rett syndrome. Dr. Lotan is an internationally renowned Rett syndrome physical therapist, author, and clinical researcher from the School of Health Sciences, Department of Physical Therapy, Ariel University, Ariel, Israel.

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