All funds raised by the Running for Rare marathon teams will support the NORD National Institutes of Health (NIH) Undiagnosed Diseases Program (UDP) Fund. Established in 2008, the NIH UDP is the primary national resource for patients and their physicians who have exhausted other alternatives in seeking a diagnosis. Those accepted into the program go to the NIH Clinical Center in Bethesda, MD, where a multidisciplinary team of medical experts seeks to unravel the mystery and determine a diagnosis. In 2014, the NIH Undiagnosed Diseases Program expanded to include a network of major academic medical centers across the U.S.
NORD NIH Undiagnosed Diseases Program
The NORD NIH Undiagnosed Diseases Program Fund, established in 2013 with the support of the running team, will pay for the medical testing for individuals who cannot afford the basic medical workup needed to make them eligible to apply for the NIH UDP. The fund supports testing for patients applying to all clinical sites within the new network across the U.S. Although 90% of rare diseases still have no approved treatment, a diagnosis is a critical milestone for patients in that it helps end isolation and allows them to connect with others facing similar challenges, in addition to creating opportunities for research.
We are thrilled to be able to provide this patient assistance program to support patients who have exhausted all other avenues to seek a diagnosis.