Kennedy Krieger Institute's Rett Clinic Recognized as a National Center of Excellence

tags: Rett Syndrome and Related Disorders Clinic FMR1 and Related Conditions Clinic

BALTIMORE, May 10, 2021Kennedy Krieger Institute is one of 15 institutions across the U.S. that recently received a Center of Excellence designation or redesignation from the International Rett Syndrome Foundation (IRSF). This special honor recognizes Kennedy Krieger’s dedication to providing best-in-class clinical care for patients with Rett syndrome, a rare neurological and developmental disorder.

As part of the designation, Kennedy Krieger receives some funding support from IRSF and will become a member in IRSF’s Center of Excellence Network.

“We are honored to receive this designation for Kennedy Krieger’s center,” says Dr. Connie Smith-Hicks, who directs the Rett and Related Disorders Clinic. “To be recognized for our efforts and hard work on behalf of our patients is very affirming. We are committed to maintaining a high standard of care and look forward to continued collaboration with other Centers for Excellence, sharing knowledge and being able to help our patients with this rare disorder.”

Rett syndrome affects girls almost exclusively and is most often diagnosed when a child is between the ages of 1 and 3. Most children have an early normal development after which development slows, or regression occurs. They also experience slowed brain and head growth, problems with walking, loss of language skills, distinctive hand movements, and sometimes seizures and intellectual disability.

To qualify as a Center of Excellence, Kennedy Krieger’s clinic team had to demonstrate that it had a physician director with expertise in Rett syndrome care; health care services that meet the unique needs of individuals with Rett syndrome; involvement in clinical trials; and an increased understanding of Rett syndrome by contributing to a clinical registry. IRSF’s Center of Excellence designation will officially go into effect for all awarded clinics on June 1.

“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 most families living with Rett syndrome have access to a Rett syndrome expert by 2024.”

Currently, many families travel up to a day to visit a physician who is knowledgeable about Rett syndrome. There also are no approved treatments for Rett syndrome, but the IRSF hopes that research from the network’s 15 centers will quicken progress toward a therapeutic development.

About Kennedy Krieger Institute:
Kennedy Krieger Institute, an internationally known nonprofit organization located in the greater Baltimore-Washington, D.C., region, transforms the lives of more than 25,000 individuals a year through inpatient and outpatient medical, behavioral health and wellness therapies; home and community services; school-based programs; training and education for professionals; and advocacy. Kennedy Krieger provides a wide range of services for children, adolescents and adults with diseases, disorders and injuries that impact the nervous system, ranging from mild to severe. The Institute is home to a team of investigators who contribute to the understanding of how disorders develop, while at the same time pioneering new interventions and methods of early diagnosis, prevention and treatment. Visit for more information about Kennedy Krieger.


Jessica Gregg
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