Recent Blogs

Find stories from other families and employees for Rettsyndrome.org who are willing to share their wisdom, experiences, worry, and hope with you! Know that you are not alone in this journey and become a part of a community who is making strides towards finding a cure.

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