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
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
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
Paige Nues, Director of Family Empowerment Rettsyndrome.org In a world of complexity, I aim for simplicity. My work at Rettsyndrome.org 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