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
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 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
The 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 society in which all people … Read More
As COVID numbers surge once again, 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 personal physician, all individuals … Read More