Undiagnosed Disease Network Foundation

The UDNF is a new non-profit organization affiliated with the Undiagnosed Diseases Network (UDN). Every year thousands of patients face uncertainty when healthcare providers are unable to discover the cause for their symptoms. Backed by the National Institutes of Health, the UDN seeks to provide answers for patients and families affected by these mysterious conditions. The UDN currently consists of 12 clinical sites around the United States, a coordinating center, a metabolomics research core, a genomic sequencing core, two model organism screening centers, and a biorepository. Over the last 10 years, the UDN has evaluated over 2,000 patients and provided diagnoses for one-third of those enrolled.

Building on these successes, the mission of the UDNF is to improve access to diagnosis, research, and care for all with undiagnosed and ultra-rare conditions through close collaboration with the UDN. The UDNF aims to foster partnerships among patients, clinicians, and scientists to enhance the quality of life of undiagnosed and ultra-rare patients and families. We do this by mitigating barriers to equity and access in healthcare; setting standards for patient management; and bridging diagnosis and therapeutics as well as research and clinical care in undiagnosed and ultra-rare diseases. Led by and for patients and their families, the UDNF will become the central resource for the undiagnosed and ultra-rare community. From when a patient first experiences unexplained symptom to their 10-year anniversary of effective treatment, the UDNF will provide the resources, community, research and care they need to live their best lives.