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Hive Networks & IRSF Partner to Advance Research and Treatment for Rett Syndrome

Monday, October 18, 2021

Hive Networks today announced a multi-year partnership with the International Rett Syndrome Foundation to provide a digital health platform to support the Rett community. Rett syndrome is a rare disease caused by a genetic mutation that affects 1 in 10,000  females and even fewer males.   Hive Networks is a digital health company that lets patients … Read More

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

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

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