Three additional clinics recognized for best-in-class Rett syndrome care.
The International Rett Syndrome Foundation (IRSF) proudly announces the designation of three new clinics as Centers of Excellence (COE). Nicklaus Children’s Hospital in Miami, Rady Children’s Hospital San Diego, and Children’s Hospital of Orange County have each been recognized for their exemplary clinical care for Rett syndrome, a rare neurological and developmental disorder. This prestigious designation includes funding support from IRSF and integration into IRSF’s Center of Excellence Network, which now comprises 21 clinics.
As a rare disease, it is common for families to have to travel to access a physician knowledgeable about Rett syndrome. IRSF’s Center of Excellence network helps to identify go-to clinics for families and educate other physicians about Rett syndrome care.
“It’s our goal that the vast majority of families affected by Rett syndrome have access to expert care within driving distance of their homes,” said IRSF CEO Melissa Kennedy. “These Centers of Excellence provide an expert-level of clinical care that allows Rett patients to thrive. Seeing this network expand is essential in making treatment options and curative therapies a reality for all families living with Rett syndrome.”
To achieve the Center of Excellence designation, clinics must demonstrate compliance with criteria established by IRSF’s Medical Advisory Board, including:
- Maintaining a physician director with expertise in Rett syndrome care
- Providing healthcare services that meet the unique needs of individuals with Rett
- Participating in Rett syndrome clinical trials
- Contributing to the IRSF Rett Syndrome Registry to increase understanding of the disorder and support drug development
The three-year designation officially commenced on June 1 for the new clinics, who join 18 other clinics across the United States whose designation was renewed.
“We are honored to once again receive COE designation from IRSF. Since our inception, our clinic has been committed to improving the quality of life for children with Rett syndrome and their families through comprehensive multidisciplinary care and clinical and translational research,” shared Cary Fu, MD, Director of the Rett Clinic at Vanderbilt University which received renewed designation. “We share in IRSF’s mission to improve care today while laying the foundation for better treatments in the future. We look forward to our continued partnership with IRSF and the other COEs as we work in unison on better care for Rett syndrome today and a cure tomorrow.”
To learn more about IRSF’s Center of Excellence network of clinics, click here.