The International Rett Syndrome Foundation is expanding our community’s access to best-in-class care by adding four Rett syndrome clinics to our Center of Excellence network. This expansion helps to fulfill IRSF’s commitment that all families living with Rett syndrome in the U.S. have ready access to a Rett syndrome expert.
“When we see care deserts, we focus on identifying and supporting clinics that can meet our rigorous requirements and provide high-quality care to families living in the area,” said IRSF CEO Melissa Kennedy. “We have more work ahead, but by bringing these four additional hospitals into our network, we are one step closer to making specialized care available to all our loved ones with Rett.”
Because Rett syndrome is a rare disease, affecting 1 in every 10,000 births, local medical providers often do not have the expertise to meet the needs of Rett syndrome patients. Our Center of Excellence network—now 18 clinics strong—makes this critical care available to more families, either through on-site clinic visits or by providing specialty consultation through our tele-mentoring (specialist to specialist) service.
Expanding the network supports research
In addition to providing excellent clinical care, the Center of Excellence network expands the infrastructure needed to support enhanced clinical research for Rett syndrome. This work is essential as there are no approved treatments for Rett syndrome. The network’s clinical trial activities, in coordination with industry partners, play an essential role in ensuring therapeutic development progresses as quickly as possible. The Centers actively contribute to the IRSF Rett Syndrome Registry, capturing clinical and outcomes data from clinicians and caregivers, which is being used to support research and drug development.
“That has always been our goal—to one day create a world without Rett—and every day we are relentless in that pursuit,” said Melissa.
IRSF is proud to announce the following additions to our Centers of Excellence network:
Cincinnati Children’s Hospital Medical Center
Medical Director: Shannon Standridge, DO, MPH
Children’s Hospital Los Angeles
Los Angeles, CA
Medical Director: Payal Gu, MD
Nationwide Children’s Hospital
Medical Director: Christopher Beatty, MD
The University of North Carolina at Chapel Hill
Chapel Hill, NC
Medical Co-Directors: Yael Shiloh-Malawsky, MD and Diana Cejas, MD, MPH
Centers of Excellence network criteria
These four new clinics join a prestigious network of clinicians and investigators who are focused on improving care for those with Rett syndrome. All 18 clinics in the network are dedicated to providing best-in-class clinical care, rigorously vetted by IRSF, and committed to maintaining:
- A physician director with expertise in Rett syndrome care
- Health care services that meet the unique needs of individuals with Rett
- Involvement in Rett syndrome clinical trials
- Contribution to the IRSF Rett Syndrome Registry to increase understanding of Rett syndrome