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.

COVID-19 Message for the Rett Community

Thursday, June 25, 2020

6.25.20 COVID-19 Community Update As many states begin to re-open, we want to share the following message containing the re-opening status of the U.S. Rett Clinics and guidance from Rettsyndrome.org’s Medical Advisor on returning to therapies and schools. Rett Clinic Re-opening Status The following information summarizes U.S. clinics’ re-opening status for clinical care of Rett … Read More

Rettsyndrome.org Announces New Scientific Advisory Board

Thursday, April 30, 2020

Exceptional Group of Scientific Leaders to Guide Foundation’s Research Investment As Rettsyndrome.org’s Chief Science Officer, a physician, and a mom to a teenager with Rett syndrome, I am dedicated to overcoming the challenges presented by Rett syndrome’s complexity on the research front. Recognizing that the best way to do this is to have input from … Read More

Child looking at Tobii

NEW Resources to Empower & Equip You During COVID-19

Friday, April 17, 2020

Rettsyndrome.org has just released these resources to support families who are confined to their homes We know that the shelter-in-place guidelines are especially challenging for our families caring for a loved one with Rett syndrome. Many therapies have been stopped or are being done in an abbreviated version so that gained ground is not lost. … Read More