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Contact Information

ndrd@chp.edu
Ph: 412-692-9955
Fax: 412-692-9900

Mail:
Children's Hospital of Pittsburgh of UPMC
One Children's Hospital Drive
4401 Penn Ave.
Pittsburgh, PA 15224

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About Us


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Mission Statement

The Neurodevelopment in Rare Disorders (NDRD) is committed to helping children and families with rare inherited neurological conditions through evaluation, education, and intervention. Our goal is to improve the quality of life for children with rare disorders through innovative research and clinical interventions. Our multidisciplinary approach focuses on the interactions of genes, brain, and behavior and their effects on child development. The NDRD is committed to training investigators and clinicians in the diagnosis and comprehensive management of these disorders. We are further dedicated to disseminating knowledge throughout the general population and the scientific community.

History of the NDRD

The NDRD was started in 2000 to help children and their families understand the overall effects of rare genetic, neurological diseases. Although our program initially focused on lysosomal storage disorders, it has expanded to include other rare inherited disorders. To date the program has performed over 2,000 evaluations in more than 700 children.

Goals

Our primary goal is to improve the quality of life for children with rare disorders and help them develop to their full potential. We offer a variety of services including educational interventions, medication management, therapy, and equipment recommendations. Our multidisciplinary approach focuses on understanding the interactions of genes, brain, and behavior. It is our belief that by examining these interactions we can best understand the disease processes and provide optimal interventions.

Because many medical professionals have little experience with these rare disorders, we are working to to increase awareness of these diseases to improve early detection and long-term outcomes for these children. In addition, the NDRD trains investigators and clinicians in the diagnosis and comprehensive management of these disorders. We are further dedicated to disseminating knowledge throughout the general population and the scientific community.

Program Affiliations

The NDRD is a program within the Children's Hospital of Pittsburgh at the University of Pittsburgh Medical Center.