Program for the Study of Neurodevelopment in Rare Disorders (NDRD)

The Program for the Study of Neurodevelopment in Rare Disorders (NDRD) is committed to helping families search for answers surrounding their children’s rare neurodegenerative conditions. Our goal is to improve the quality of life for children with these disorders to help them achieve their full potential. We do this through education, innovative research, and clinical interventions, including medication management, behavioral and communications support techniques, adaptive equipment, and novel interventions.

The program was started in 2000 to improve our understanding of these genetic neurodegenerative diseases. Its multidisciplinary approach focuses on the interactions of genes, the brain, and behavior and their effects on child development. Over the years, the NDRD team has performed thousands of standardized evaluations on children from throughout the United States and around the world, resulting in unparalleled insights into these rare conditions.

This experience, combined with ongoing clinical research, provides the expertise to assess the multisystem needs of patients and to plan appropriate management, therapies, and palliative care when needed. Children seen through the NDRD program receive comprehensive evaluations, including physical and neurological exams, medical imaging, nutrition and feeding assessments, and other tests, followed by treatment plans that are individualized to their unique needs.

Additionally, the team consults with local health care providers and educators to assist them in providing care to children with these rare diseases. Importantly, the NDRD program is committed to training investigators and clinicians in the diagnosis and comprehensive management of these disorders and building greater awareness throughout the general population and scientific community

Learn more with these resources and downloads. 

Referral Requirements

To make an appointment or inquire about the program, please call 412-692-6350 or email

Research and Clinical Studies

As a nationally recognized research center, UPMC Children’s Hospital’s NDRD participates in the latest clinical studies, which involve human volunteers and are intended to add to our medical understanding.

Additional Information