Category

Homepage

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

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

Hive Networks & IRSF Partner to Advance Research and Treatment for Rett Syndrome

Monday, October 18, 2021

Hive Networks today announced a multi-year partnership with the International Rett Syndrome Foundation to provide a digital health platform to support the Rett community. Rett syndrome is a rare disease caused by a genetic mutation that affects 1 in 10,000  females and even fewer males.   Hive Networks is a digital health company that lets patients … Read More