Rare Disease Caucus Chairs Applaud NIH Initiative to Establish Undiagnosed Diseases Network

July 3, 2014
Press Release

(Washington, D.C.)Today, Reps. Joe Crowley (NY-14) and Leonard Lance (NJ-7), co-chairs of the Congressional Rare Disease Caucus, issued the following statement applauding the recent announcement that the National Institutes of Health (NIH) is adding six clinical sites to its Undiagnosed Diseases Network to diagnose rare diseases:

“For the 30 million people with rare diseases and their families, achieving a diagnosis is the first step of what is often a challenging road ahead. But getting a diagnosis itself can be a difficult and discouraging process. Many rare diseases are so extremely rare, or even undiscovered, that doctors have trouble identifying and treating these conditions.

“The NIH has been providing a ray of hope to many families through its Undiagnosed Diseases Program, and this expansion to six new centers nationwide will enable even more people to benefit not only from their expertise, but also their targeted focus on a field that may often be overlooked. This new Undiagnosed Diseases Network will bring much-needed attention to the needs of people living with rare diseases, and will further spur our medical community to make greater advances in identifying and treating rare diseases.

“With nearly 7,000 rare diseases in existence, many with no known treatment, every step forward can make a significant difference for people with rare diseases. We applaud the NIH for this new investment in a much-needed program.”

The nearly-50 member strong Rare Disease Caucus was established in 2010. The Caucus is focused on bringing Congressional attention to the nearly 7,000 known rare diseases, many of which currently have no approved therapies; ensuring sufficient funding for research and orphan product development; exploring ways to incentivize companies to create new drugs, biologics and humanitarian use devices; and providing an opportunity for Members of Congress, families, and advocacy groups to exchange ideas and policy concerns. Rare and neglected diseases afflict nearly 30 million Americans, approximately half of whom are children.