Neurodevelopmental Program in Rare Disease
For people and families touched by rare disease conditions, the Neurodevelopmental Program in Rare Disease (NPRD) is comprised of a multidisciplinary team that works together to support the care of the whole patient.
For some individuals who do not yet have a diagnosis, pursuing an evaluation may be the next step in learning more about the possible rare disease present and supports and resources available. The Neurodevelopmental Program in Rare Disease (NPRD) at the University of Minnesota is here to provide guidance in pursuing an evaluation.
The NPRD is located in the Masonic Institute for the Developing Brain (MIDB)
2025 E River Pkwy.
Minneapolis, MN 55414
612-365-8400
For questions or support related to research, education, advocacy, or other program matters, individuals and caregivers may also connect with the NPRD at NPRD@umn.edu.
In addition to reaching out to the NPRD, individuals and caregivers pursuing an evaluation or diagnosis may also consider clinical trials taking place at the National Institutes for Health (NIH). More information can be found by emailing the NIH Clinical Center at: prpl@mail.cc.nih.gov.
Support is critical for individuals and families navigating a rare disease diagnosis and subsequent care. There are many organizations and resources available in the form of patient organizations, family support groups, disability resources, books, and articles. Clinicians and researchers at the NPRD are dedicated to providing this support through the sharing of their expertise, furthering of critical research, and providing direct care tailored to each patient. In addition to the support available at the NPRD, resources and support groups can be found in the Patient Resources link below:
Rare Disease Information - University of Minnesota Department of Pediatrics
Rare disease support groups are a vital component of the rare disease community, offering access to information and resources, connection with other individuals and caregivers with shared experiences, and fostering collective action that drives research and policy. The National Institutes of Health Genetic and Rare Disease (GARD) Information Center includes information about more than 6,000 identified rare diseases, including links to support groups when available.
NIH Genetic and Rare Disease (GARD) Information Center
Additional resources and support groups are linked below:
