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The Batten Disease Support, Research, and Advocacy (BDSRA) Foundation has designated the University of Rochester Batten Center (URBC) as a Center of Excellence. This recognition highlights URBC’s dedication to providing specialized multidisciplinary care and advancing research for Batten diseases, a collection of rare and fatal neurodegenerative disorders affecting children.

This announcement, made at the BDSRA Foundation’s Annual Family Conference, is part of a broader initiative to improve patient outcomes and support families impacted by Batten diseases. URBC is one of only five institutions named by the organization as a Center of Excellence and is part of the newly established University of Rochester .

“This recognition underscores our commitment to providing comprehensive care to patients and their families while advancing critical research,” said pediatric neurologist Jennifer Vermilion, MD, director of the URBC. “With this support, we will continue our efforts to develop new therapies and improve the quality of life for those affected by Batten diseases.”

URBC offers a multidisciplinary approach to treating Batten diseases, ensuring that patients receive coordinated care from a team of specialists. The clinical team includes neurologists, geneticists, ophthalmologists, neuropsychologists, and other healthcare professionals who work together to address the complex needs of Batten patients and their families.

URBC is at the forefront of Batten disease research, with several ongoing projects aimed at understanding the disease and developing new treatments. The center’s research efforts focus on characterizing the natural history of Batten diseases, identifying biomarkers for early diagnosis, understanding the genetic and molecular mechanisms underlying the disease, and exploring potential gene therapies. Researchers at URBC are also involved in clinical trials testing new therapies that aim to slow or halt disease progression.

The new aims to optimize patient outcomes, accelerate research, and improve the quality of life for individuals affected by Batten diseases and their families. This program increases access to the best possible clinical care and sub-specialty services through a national network of centers. Alongside URBC, other institutions designated as Centers of Excellence include Children’s Hospital Colorado, Children’s Hospital of Orange County, Kennedy Krieger Institute, and Nationwide Children’s Hospital.

URBC’s collaboration with the BDSRA Foundation and other Centers of Excellence will help advance the field of Batten disease research and care. Working collaboratively, these institutions will share knowledge, standardize care practices, and contribute to a larger body of research that benefits patients worldwide.