Chairman Carter introduces Undiagnosed Diseases Bill
Washington, DC, April 23, 2013
Bill could provide a nationwide network to help patients with undiagnosed diseases, including children and soldiers
– Congressman John Carter (R-TX31) reintroduced the Charles August Long Undiagnosed Diseases Research and Collaboration Network Act of 2013 to Congress Wednesday, April 17.
The bill, HR 1591, would help individuals and military Service Members and Veterans who have unexplained symptoms and medical problems by establishing an undiagnosed diseases registry. Currently there is not a registry that helps physicians and researchers diagnose and treat those with unexplained conditions. It would also:
The bill was named after Cal Long, a Cedar Park child who recently died from an undiagnosed disease when he was only five years old. During his life, Cal developed many unexplained medical problems such as neurological difficulties, cerebral atrophy, severe headaches, uncontrolled vomiting, and seizures. Young Cal eventually lost the ability to walk.
Cal’s family visited several specialists and had countless tests run in the hopes of finding a diagnosis. They were often told what the disease was not, but were never given an actual diagnosis. As they watched their son dying, the unimaginable pain was worsened by the fact that they did not know what was killing him. Congressman
The bill was created with collaboration from the Center for Disease Control and the National Institutes of Health. It has been co-sponsored by other members of the House of Representatives; Charles Rangel (D-NY13), Peter King (R-NY2), Michael Burgess (R-TX26), Michael McCaul (R-TX10), and Jackie Speier (D-CA14).