IRSF Appoints Partner Clinics For New Center of Excellence Network

Cincinnati, OH: The International Rett Syndrome Foundation (IRSF) announced today that it will appoint 15 clinics across the U.S. to help expand access to best-in-class clinical care for Rett syndrome, a rare neurological and developmental disorder. These clinics have demonstrated expertise in Rett syndrome care and involvement in clinical trials along with other requirements defined by IRSF’s Medical Advisory Board. Together, they will form IRSF’s new Center of Excellence network.

Each of these clinics is being designated (or redesignated) an IRSF Center of Excellence:

• Boston Children’s Hospital – Boston, MA
• Center for Rare Neurological Diseases – Atlanta, GA
• Children’s Health – Dallas, TX
• Children’s Hospital Colorado – Denver, CO
• Children’s Hospital of Philadelphia – Philadelphia, PA
• Gillette Children’s Specialty Healthcare – St. Paul, MN
• Greenwood Genetic Center – Greenwood, SC
• Kennedy Krieger Institute – Baltimore, MD
• Montefiore Medical Center – Bronx, NY
• Rush University Medical Center – Chicago, IL
• Louis Children’s Hospital – St. Louis, MO 
• Texas Children’s Hospital – Houston, TX    
• University of Alabama-Birmingham – Birmingham, AL
• UCSF Benioff Children’s Hospital Oakland – Oakland, CA
• Vanderbilt University Medical Center – Nashville, TN

The new two-year designation will officially go into effect on June 1, 2021 and comes with funding support from IRSF.

“This network is part of IRSF’s goal to get families the expert Rett clinical care that their loved ones need to thrive,” says IRSF CEO Melissa Kennedy, “Our goal is that the vast majority of families living with Rett syndrome have access to a Rett syndrome expert by 2024.”

Most local providers are not trained on Rett syndrome, and many families must travel for an entire day to visit a physician who knows how to care for Rett patients. IRSF hopes that recognizing clinics as Centers of Excellence will make it easier for families to identify the nearest Rett expert. Additionally, each Center of Excellence will have the option to expand its impact by mentoring external physicians.

There are no approved treatments for Rett syndrome, and the network’s clinical trial research will play an essential role in ensuring therapeutic development progresses as quickly as possible.

“The infrastructure created by our Center of Excellence partners allows us to aggressively engage in clinical research,” says IRSF CSO Dominique Pichard, MD, “This is the only way to make treatment options and curative therapies a reality for ALL families living with Rett syndrome.”