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Undiagnosed Disease Bill Introduced in House

(l-r) Loewy, Long, Carter, Dreier, Roof, and Ansley unveil new legislation in press conference in U.S. Capitol

For immediate release: July 27, 2011
NIH Slated to house national database on undiagnosed illnesses


(WASHINGTON, DC) – Patients suffering from undiagnosed illnesses will have an improved chance of discovering successful treatment options if a bill introduced today by U.S. Rep. John Carter (R-TX) is passed into law.  Carter and original co-sponsor House Rules Committee Chairman David Dreier (R-CA) introduced the Charles August Long Undiagnosed Diseases Research and Collaboration Network Act of 2011.  The bill would create an Undiagnosed Disease database at the National Institutes of Health for maintenance of case records to advance the early detection, prevention, treatment, cure, and control of currently undiagnosed and unregistered diseases.

“This bill will provide the commonsense networking tools for our medical community to better share information on undiagnosed illnesses,” said Carter.  “With physicians equipped to instantly share data nationwide on mystery conditions, we can develop more effective treatments and eventually cures for illnesses that currently defy definition.”

“The challenges faced by families dealing with the undiagnosed illness of a loved one are beyond daunting,” Dreier said.  “After studying this issue for some time, I was surprised to learn that there is not a more effective approach for physicians to identify and talk with other doctors who are treating patients with similar undiagnosed illnesses.   The establishment of the CAL Network will put in place a forum for physicians to search for similar cases and facilitate cross-disease research of undiagnosed diseases.  Ultimately, the faster a problem can be diagnosed, the easier it will become to improve the care of the patient.”

The bill is named for 5-year old Carl August Long ‘Cal’ of Cedar Park, Texas, who passed away in December 2006 of an undiagnosed illness.  Cal’s mother, Heather Long of Cedar Park, Texas, attended today’s news conference. Long asked Carter to help with legislation following her son’s loss in spite of the family’s three year struggle to discover the cause of the child’s illness.

Also attending was James Alton, an undiagnosed disease patient and his parents, Greg Alton and Caroline Loewy of Atherton, California; AMVETS National Deputy Legislative Director Christina Roof, and VetsFirst Executive Director Heather Ansley.

Carter, House Republican Conference Secretary, says a national database for undiagnosed illness would not only benefit children, but would be a health asset for the nation’s veterans. “Every war invariably produces veterans who have contracted previously unknown ailments and illnesses.  This bill could significantly lessen the amount of time necessary to research and diagnose their symptoms and develop effective treatments.  It could also provide an early warning system in the event our military personnel were unknowingly exposed to chemical or biological agents.”
Contact:; (202) 225-3864
U.S. Rep. John Carter
31st District of Texas
409 Cannon House Office Building
Washington, DC 20515



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