Category

Blog

Accelerating Discoveries in Rett Research: 2022 IRSF Rett Syndrome Scientific Meeting

Thursday, May 26, 2022

In April 2022, the International Rett Syndrome Foundation hosted the IRSF Rett Syndrome Scientific Meeting in advance of the foundation’s first in-person family summit in 6 years. The 2-day meeting brought together more than 150 clinical, academic, and industry experts from around the world, all working towards the common goal of developing effective treatments and … Read More

Taysha Rett Syndrome Community Update

Wednesday, March 30, 2022

From IRSF: 2022 is a big year for Rett syndrome: the return of an in-person Family Summit, a successful EL-PFDD meeting to share the voice of the community with the FDA, ACADIA will submit a new drug application to the FDA to request approval of trofinetide as the first medication specifically targeting Rett syndrome, and … 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