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IRSF Blog
IRSF is dedicated to transforming the lives of every individual affected by Rett syndrome. Read stories of those impacted by Rett and dive deeper into the resources and support available for families navigating this journey.

November 21, 2024
Raising a Hand: A Journey of Healing, Hope, and Friendship
Inconceivable. That’s the word that photographer Dave Clements uses to describe the emotion swelling in his stomach when thinking back to March 9, 2003. It was that spring afternoon in […]

Jan 14, 2025
Acadia Pharmaceuticals Submits Marketing Authorization Application to the European Medicines Agency for Trofinetide for the Treatment of Rett Syndrome

Jan 03, 2025
IRSF Leadership Update
After a 7-year tenure, Melissa Kennedy stepped down as CEO at the end of 2024. Board…

Nov 21, 2024
Update on Patient SAE & Discontinuation of High Dose Protocol (Community Letter)

Nov 21, 2024
Raising a Hand: A Journey of Healing, Hope, and Friendship
Inconceivable. That’s the word that photographer Dave Clements uses to describe the emotion swelling in his…


Nov 18, 2024
Neurogene Provides Update on NGN-401 Gene Therapy Clinical Trial for Rett Syndrome
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