Rush has been named a Clinical Center of Excellence and Affiliate member by the Batten Disease Support, Research and Advocacy Foundation. Rush is one of only nine centers across the United States to receive the honorary designation.
“Batten disease is a rare genetic disease of the nervous system that claims the lives of hundreds of children every year,” said Elizabeth Berry-Kravis, MD, PhD, professor in the Department of Pediatrics at Rush. “We are proud to be named a center for excellence in the shared goal of finding new treatments in the fight for eliminating this devastating disease.”
The unveiling of the national Batten Disease Centers of Excellence Program and its nine founding members marks a significant step forward for Batten disease clinical care, support and research.
The foundation's Center of Excellence Program aims to optimize patient outcomes, accelerate research and improve the quality of life for people affected by Batten disease and their families by increasing access to the best possible clinical care and subspecialty services through a national network of centers.
“Families seeking clinical care for their affected loved ones can be confident that these recognized centers are providing best-in-class, comprehensive care,” said Amy Fenton Parker, foundation president and CEO.
“The collaboration with the BDSRA and between this network of centers has already been phenomenal,” Parker said. “The group is developing great plans for advancing clinical care and research, and we look forward to bringing more centers into the fold to ensure more Batten patients and their families can access the very best care, no matter where they live in the U.S.”
In addition to Rush, the other Clinical Centers of Excellence are: Children’s Hospital Colorado, Children’s Hospital of Orange County, Kennedy Krieger Institute, Nationwide Children’s Hospital; and the University of Rochester Batten Center, C.S. Mott Children’s Hospital at the University of Michigan Medicine, NYU Langone Health and UNC Hospitals were named Affiliate Centers.
