Batten Disease Center of Excellence

Services

At the UNC Batten Disease Center of Excellence, we provide compassionate, comprehensive care through a multidisciplinary team of specialists in neurology, rehabilitation medicine, ophthalmology, physical, occupational, and speech therapy, nutrition, and social work. Our dedicated nurse care coordinator supports families throughout their journey, including managing CLN2 Batten-specific treatments such as Brineura intraventricular infusions and intravitreal injections. We are committed to delivering personalized care and coordinated services to meet the unique needs of each patient and family.

Neurogenetic Services

Center patients benefit from specialized neurogenetic services designed to provide clarity, support, and personalized care. Our team includes neurologists, genetic counselors, and researchers who work together to evaluate and diagnose neurogenetic conditions through comprehensive assessments, including genetic testing and counseling. Each case is reviewed in clinical case conferences to ensure thoughtful, collaborative decision-making. We also offer access to research opportunities and emerging therapies, helping families navigate complex diagnoses with expert guidance and compassionate care.

Research

Team

Specialists

Research Staff

Referral

Providers – please specifically state the Batten Disease Clinic in the patient referral.

• Providers who have access to UNC CareLink can submit a referral online. If you would like to enroll, click on the link and select “Request an Account.” You may wish to download an overview of the referral portal or view a step-by-step guide on how to sign up.
• If you don’t have a UNC CareLink account, please fax a completed referral form, including a specific referral question and records to (984) 974-5473. Please call (984) 974-7337 if you have any questions.

For more information on the referral process, please visit the Referring Provider Resources page – Child Neurology Referral Information.

Clinic Location