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IRSF Appointed to NHC Standard of Excellence Program

Friday, September 10, 2021

The National Health Council (NHC) Standard of Excellence program recently appointed IRSF to its prestigious membership. The NHC is a 100-year-old organization whose mission is to provide a united voice for the 160 million people living with chronic diseases and disabilities. Created by and for patient organizations, NHC envisions a society in which all people … Read More

COVID UPDATE: Best practices according to our medical expert

Tuesday, August 17, 2021

As COVID numbers surge once again, we have asked IRSF Medical Advisor Dr. Tim Benke, Rett Clinic Medical Director at Children’s Hospital Colorado, to provide information related to COVID-19 to keep our families and community healthy and safe at this time. Vaccinations: We continue to advise: unless told otherwise by their personal physician, all individuals … Read More

Help Unlock Treatments & Cures for Rett with IRSF’s Rett Syndrome Registry

Thursday, June 17, 2021

Your family can be the key that researchers and industry need to create a world without Rett. And the International Rett Syndrome Foundation (IRSF) is making it easier than ever for families to help unlock treatments and cures through the new Rett Syndrome Registry™. “Everything IRSF does is designed to accelerate the creation of treatments … Read More

International Rett Syndrome Foundation’s New Center of Excellence Network

Tuesday, May 4, 2021

The International Rett Syndrome Foundation is committed to advancing and expanding our community’s access to best-in-class Rett syndrome care. Toward that end, we are designating 15 partner clinics across the U.S. to our Center of Excellence Network. “Establishing this network is part of IRSF’s goal to get families the expert Rett clinical care that their … Read More

COVID Update: Rett syndrome and the COVID vaccine

Monday, January 25, 2021

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