University of Rochester Batten Center

The University of Rochester Batten Center (URBC) has provided expert multidisciplinary care and led innovative Batten disease research for more than 20 years. As a nationally recognized leader in Batten disease care and research, the URBC partners with families, clinicians, researchers, and advocacy organizations to improve outcomes and accelerate progress toward new therapies.

National Recognition and Leadership

• BDSRA Foundation Center of Excellence
• Member of the Batten Disease Clinical Research Consortium (BDCRC)
• Leading the BDCRC longitudinal natural history study
• Over two decades of expertise in Batten disease clinical care and research

Recent News & Highlights

NIH Funds New Batten Disease Clinical Research Consortium (BDCRC)

The National Institutes of Health awarded multi-million-dollar funding to establish the Batten Disease Clinical Research Consortium (BDCRC), the first U.S. research network dedicated to advancing treatments for Batten disease. The URBC is proud to be one of 14 participating sites nationwide and is leading the consortium’s longitudinal natural history study, including innovative digital approaches to evaluate gait, communication, and patient-centered outcomes.

Recognized as a BDSRA Foundation Center of Excellence

In 2024, the University of Rochester Batten Center was recognized as a BDSRA Foundation Center of Excellence, reflecting our longstanding commitment to exceptional multidisciplinary care, clinical expertise, and leadership in Batten disease research.

Our Mission

The University of Rochester Batten Center is dedicated to improving the lives of individuals and families affected by Batten disease through:

• Expert multidisciplinary clinical care
• Innovative research to advance treatments and understanding of the Batten diseases
• Education for families, clinicians, trainees, and the broader community
• Advocacy and partnership across the Batten disease community
• Collaboration to improve care and accelerate therapeutic development

Why the URBC?

• Multidisciplinary expertise in pediatric neurology and rare neurodegenerative disorders
• National and international collaborations focused on advancing Batten disease care and research
• Leadership in natural history studies and development of novel clinical outcome measures
• Commitment to patient-centered care and family partnership

Connect With Us

Whether you are seeking clinical care, interested in research participation, or looking to collaborate, the URBC team is committed to supporting individuals and families affected by Batten disease.