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NIH Creates Network to Tackle Rare Diseases


NIH Creates Network to Tackle Rare DiseasesThe National Institutes of Health this week announced the launch of a network of six universities around the country that will help diagnose patients with super rare diseases.

The network "will focus on the rarest of disorders, often those affecting fewer than 50 people in the entire world," said Dr. Eric Green, director of NIH's National Human Genome Research Institute.

The Undiagnosed Diseases Network (UDN) includes six centers: Baylor College of Medicine in Houston, Duke University, Stanford University, University of California, Los Angeles, Vanderbilt University and the Harvard University teaching hospitals Brigham and Women's, Massachusetts General and Boston Children's.

NIH Creates Network to Tackle Rare Diseases

The NIH is pumping $43 million into the program hoping to at least identify new diseases and eventually find treatments and cures. The initiative recognizes that “undiagnosed diseases are conditions that even skilled physicians cannot diagnose despite extensive clinical investigation. They may not be recognized by doctors because they are rarely seen, are previously undescribed, or are rare forms of more common diseases”.

Each new clinical site may have variations in handling health insurance coverage for clinical testing and care. However, according to the NIH, no patient will be turned away from participation in the UDN based on lack of health insurance coverage.

The network will start up and test its operating procedures during its first year. By 2017, each center hopes to be admitting 50 patients per year. The NIH is accepting referrals from clinicians on behalf of undiagnosed patients through an online application that can be found at rarediseases.info.nih.gov/undiagnosed.