1.25.21 COVID UPDATE: Best practices according to our medical expert. Last month, we shared our recommendations from the Rett Medical Community regarding the Covid-19 vaccine: unless told otherwise by their personal physician, all individuals with Rett syndrome and their families, caregivers, therapists, and teachers should be vaccinated. We are awaiting approval for those younger than 16 for … Read More
Kelsey Clark felt alone and isolated when her five-year-old daughter Charlee was diagnosed with Rett syndrome in April 2019. Kelsey, her partner Jordan, Charlee, and their two-year-old son Bennett live just over an hour from New Orleans in the small town of Amite—population 4,200—and had never even heard of the disease before. Kelsey’s grandmother, a … Read More
RSO Establishes Medical Advisory Board to Enhance Clinical Care and Research Availability Creating a world without Rett syndrome requires a national network of clinics that are working closely together, sharing best practices, ensuring excellent care, and standing ready to participate in clinical trials. To make this network a reality, International Rett Syndrome Foundation has partnered … Read More
By Samantha Brant, Family & Community Engagement Manager, Mom to Macy When most families find out their child has Rett syndrome, it’s the first time they’ve ever heard of the disease. Often they’re overwhelmed with emotions and fear and questions as they try to figure out what to do next, and many families search the … Read More
By Dominique Pichard, MD, Chief Science Officer, Rettsyndrome.org We wanted to explain this incredibly complicated work and at the same time let you know that we’ve got you covered. We are working hard to provide a better life for your loved ones with Rett syndrome. It is believed that the greatest life improvements will come … Read More
The International Rett Syndrome Foundation (IRSF) is looking for a passionate storyteller and marketer to advance our mission of accelerating research and empowering families affected by Rett syndrome.