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Setting the Standard in Best-in-Class Care and Rett Syndrome Centers of Excellence

Thursday, September 17, 2020

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, Rettsyndrome.org has partnered with 11 esteemed clinical … Read More

Serving & Equipping Families with Rett

Wednesday, July 29, 2020

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

Gene Modifying Therapy

Gene Modifying Therapy Research: Accelerating Toward a Cure

Wednesday, July 22, 2020

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

Rettsyndrome.org Launches Rett Research Ready™ and myRett Trial Finder

Wednesday, July 15, 2020

Program supports participation in clinical trials to develop treatments for the rare condition Rettsyndrome.org has launched a program to enable families with loved ones affected by Rett syndrome to explore and participate in clinical research. Rett Research Ready™ is an online platform that includes education, resources and support to help families consider volunteering for research … Read More

Board of Directors Welcomes Alan Shukovsky —The Father of a Boy Living With Rett

Friday, July 10, 2020

When Alan Shukovsky and his wife, Eva, were getting married, their rabbi told them that it was really important for their family to find a personal mission—a cause—they could support throughout their lives. Alan and Eva Shukovsky welcomed their son Grayson on April 2, 2015, but at around six months they became concerned about his … Read More