Congressional bill proposes national undiagnosed diseases registry

On May 21, 2009, Rep. John Carter (R-TX) introduced a bill, H.R.2538, into the U.S. House of Representatives. Called the Charles August 'CAL' Long Undiagnosed Diseases Registry Act of 2009, it would provide for the establishment and maintenance of an undiagnosed diseases registry in the U.S.. through the Centers for Disease Control and Prevention (CDC). The purpose of the registry would be to facilitate the early recognition, prevention, treatment, cure, and control of such diseases, and appropriates $5 million for fiscal year 2010. The bill was referred to the Committee on Energy and Commerce.

The bill is named after Cal Long, a boy who passed away in December 2006 at the age of 5 from an undiagnosed disease. His mother, Heather, says, "I still do not know what it was that took his life, but I am now advocating for families who have children that are undiagnosed as well as adults." The registry would be a central location for information about undiagnosed diseases for doctors and researchers, and would facilitate communication about cases that have eluded diagnosis.

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