Batten Disease Centers of Excellence

BDSRA has developed and implemented several Batten Disease Centers of Excellence across the United States and in other countries. A Batten Disease Center of Excellence is available to all families interested in receiving treatment from a team of professionals who have experience dealing with and treating all forms of Batten disease.

BDSRA currently has established seven Batten Disease Centers of Excellence and plans to further expand this number over the next several years. Five of the Centers are listed below — please note that we are finalizing information about Texas Children's Hospital in Houston and the Institute for Mother and Child Healthcare of Serbia in Belgrade and will provide those updates soon.

Families who attend the designated "Clinic Day" at a Center of Excellence will receive care from the lead pediatric neurologist as well as other healthcare professionals such as a nurse, social worker, and/or genetic counselor. Patients will also be able to receive consultations from other medical specialists such as a cardiologist, pulmonologist, gastroenterologist, etc. It is a goal of the Centers of Excellence to ensure patients and their families receive well-rounded and complete care for all their needs.

Massachusetts General Hospital--Boston, MA

Clinic Day: Third Thursday of each Month
Contact: Kellie Burke
Phone: (617) 726-5732

Kellie A. Burke, Dr. Katherine B. Sims, Susan Cotman Ph.D, Danielle Metterville GC, Yi Cao Ph.D, Xin Feng, Marcy MacDonald Ph.D, and Kendrick Goss Ph.D

Nationwide Children's Hospital--Columbus, OH

Clinic Day: Second Monday of each month
Contact: Sally Steward, RN, MS, CNP
Phone: (614) 722-4629



Dr. Emily de los Reyes and Dr. E. Steven Roach

University of Rochester Medical Center--Rochester, NY

Clinic Days: Friday mornings
Contact: Amy Vierhile, LPN
Phone: (585) 275-4762

Fred Marshall, Amy Vierhile, Nicole Newhouse, Jon Mink, Paul Rothberg, Jennifer Kwon, Heather Adams, Erika Augustine, and Lisa de Blieck
Click here to read a news story about URMC being named a Batten Disease Center of Excellence

Oregon Health & Science University/Doernbecher Children's Hospital -- Portland, OR

Clinic Days: Third Tuesday of each month
Contacts: Jessica Adsit, MS / Sothea Ros, Clinic Coordinator
Phone: (503) 494‐6524 / (503) 494‐7859


Back Row: Mark Pennesi, MD, PhD, Robert Steiner, MD, Nate Selden MD, PhD, Tom Koch, MD. Front Row Jill Christie, PA, Amira Al-Uzri, MD, Jessica Adsit, MS.
Click here to read a news story about OHSU being named a Batten Disease Center of Excellence

Hospital De Ninos De La Provincia De Cordoba, Argentina-Cemeco

Clinic Days: First Monday of each month
Contacts: Ines Noher de Halac, PhD
Phone: (+54)351 4575974


From left to right: V Tapia Anzolini Technician, N Guelbert MD PhD, AM Oller PhD, R Dodelson de Kremer MD PhD, I Noher de Halac, MD PhD, IA Cismondi MSc, Romina Kohan PhD, G Alonso, MSc.