Archive

Year: 2022

The Summit of Hope and Healing: ASCEND 2022 Rett Syndrome National Summit

Wednesday, June 8, 2022

By Katie Busch, IRSF Program Coordinator –  During the last week of April 2022, the International Rett Syndrome Foundation welcomed more than 500 members of the Rett community to the ASCEND 2022 Rett Syndrome National Summit. Held in Nashville, Tennessee, at the Gaylord Opryland Resort & Convention Center, the sold-out summit marked the first in-person … Read More

Clinical Trial Committee

IRSF Launches Clinical Trial Committee to Support the Development of Rett Syndrome Treatments

Tuesday, May 31, 2022

The Clinical Trial Committee includes 14 leading U.S. Rett syndrome specialists CINCINNATI – (May 31, 2022) – The International Rett Syndrome Foundation (IRSF) announced today that its Clinical Trial Committee (CTC) has launched, having completed its first protocol review, and is available as a resource to drug developers and pharmaceutical companies planning clinical trials to … Read More

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