Where Can Parents Go for More Information on Rare Disease Research?

In addition to NIH and NORD there are many university-based centers for rare disease.

Today’s feature: The Boler-Parseghian Center for Rare and Neglected Diseases at The University of Notre Dame, South Bend, IN.

The Center for Rare and Neglected Diseases builds partnerships among the diverse stakeholders of the rare and the neglected disease communities, including patients, healthcare providers and organizations, the National Institutes of Health, academic researchers, funding sponsors, and drug companies. The aim of these collaborations is to support the discovery of novel diagnostics and therapeutics for these diseases.

The CRND features a number of divisions, a YouTube Channel and a newsletter. Check it out here.

One of their initial studies was on Niemann-Pick Disease type C ( NP-C) and aided in the development of understanding the natural history of this disorder. Natural histories are critical to understanding a disease and crucial to clinical trials and drug development. Learn more about NP_C here.


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