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News

IRSF Expands Center of Excellence Network

Wednesday, July 20, 2022

The International Rett Syndrome Foundation is expanding our community’s access to best-in-class care by adding four Rett syndrome clinics to our Center of Excellence network. This expansion helps to fulfill IRSF’s commitment that all families living with Rett syndrome in the U.S. have ready access to a Rett syndrome expert. “When we see care deserts, … Read More

Federal Funding Bill for 2022 Supports Research for Rett Syndrome

Monday, March 28, 2022

CINCINNATI – March 22, 2022 – The Omnibus Fiscal Year 2022 (FY22) appropriations bill passed by Congress in early March includes federal funding to support research on Rett syndrome. The report accompanying the legislation listed Rett syndrome as a topic eligible for research funding through the U.S. Department of Defense (DoD) Peer-Reviewed Medical Research Program … Read More

2021 IRSF funded research

IRSF Sets Up Next Wave of Rett Breakthroughs with $2.3 M Research Investment

Wednesday, December 22, 2021

Dr. Dominique Pichard, IRSF Chief Science Officer Get ready for the next wave of research targeting treatments and cures for Rett syndrome. IRSF is making it happen. “Because Rett syndrome is a rare disorder, our Foundation’s investments strongly influence the direction and pace of Rett research, as well as the potential treatment options that come … Read More

Positive Trofinetide Results

Positive Top-line Results for Phase 3 Trofinetide Trial

Monday, December 20, 2021

Melissa Kennedy, Chief Executive Officer On December 6, the Rett syndrome community received some very encouraging news: Acadia Pharmaceuticals reported that top-line results for its Lavender Phase 3 clinical trial for trofinetide showed significant improvement over placebo. With these positive findings, Acadia will request a pre-New Drug Application meeting with the FDA in the first quarter … Read More

COVID UPDATE: Best practices according to our medical expert

Friday, December 10, 2021

As the COVID pandemic continues with surges and new variants, we have asked IRSF Medical Advisor Dr. Tim Benke, Rett Clinic Medical Director at Children’s Hospital Colorado, to provide information related to COVID-19 to keep our families and community healthy and safe at this time. Vaccinations: We continue to advise: unless told otherwise by their … Read More