Rettsyndrome.org

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, …

Actived: 7 days ago

URL: https://www.rettsyndrome.org/taysha-rett-syndrome-community-update/

About Rett Syndrome

WebAbout Rett Syndrome. Rett syndrome is a rare genetic neurological disorder that affects 1 in 10,000 females (and even more rarely in males) and begins to display itself in missed …

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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 call the …

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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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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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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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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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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 Center …

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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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IRSF Appointed to NHC Standard of Excellence Program

WebThe National Health Council (NHC) Standard of Excellence program recently appointed IRSF to its prestigious membership. The NHC is a 100-year-old organization whose mission is to provide a united voice for the 160 million people living with chronic diseases and disabilities. Created by and for patient organizations, NHC envisions a …

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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 needed …

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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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Children and Youth with Special Healthcare Needs (CYSHN)

WebVisit Children and Youth with Special Healthcare Needs Website 1-404-657-2850 The CYSHN program’s goal is to provide resources to Georgia’s 18 Health Districts in the …

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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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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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