Introducing My Rett Ally: A New Tool to Support Caregivers

Tuesday, July 18, 2023

My Rett Ally, a web application powered by mejo, is specifically designed for Rett syndrome patients and families to simplify and enhance care coordination. The International Rett Syndrome Foundation (IRSF) is pleased to announce the launch of the My Rett Ally web app, a valuable addition to the resource toolkit for parents and caregivers of … Read More

Clinical Trial Updates from Taysha & Anavex

Wednesday, June 28, 2023

We are excited to share news from two pharmaceutical companies working on potential treatments and cures for Rett syndrome. Taysha Gene Therapies Taysha Gene Therapies shared that they are encouraged by the initial clinical observations of the first adult patient dosed in their TSHA-102 REVEAL Phase 1/2 gene therapy trial in Canada. Further clinical updates … Read More

¡Un logro para Rett: la FDA aprueba Trofinetide para el tratamiento del Síndrome de Rett!

Monday, March 13, 2023

Este tratamiento, el primero de su tipo, está aprobado para personas con síndrome de Rett. Hoy, Acadia Pharmaceuticals anunció que su medicamento en investigación, Trofinetide, ha sido aprobado por la Administración de Alimentos y Medicamentos (FDA) de los Estados Unidos para el tratamiento del síndrome de Rett en pacientes adultas y pediátricas. El medicamento, comercializado … Read More

Pioneers Add to RSO’s Value in Clinical Trial Process

Monday, April 23, 2018

Paige Nues, Director of Family Empowerment In a world of complexity, I aim for simplicity. My work at has always been to focus around the age-old basics: Why, What, Where and When. My ‘Why’ started simply: our daughter Katie was diagnosed with Rett syndrome and I couldn’t sit by and wait for someone … Read More