Washington Office
233 Cannon HOB
Washington, DC 20515
Office (202) 225-2305
Fax (202) 225-7018
District Office
510 East Foothill Boulevard
Suite 201
San Dimas, CA 91773
Office (909) 575-6226
Toll Free (888) 906-2626
Fax (909) 575-6266
Dreier Introduces Legislation to Create Undiagnosed Diseases Network
WASHINGTON, DC - Congressman David Dreier (R-CA) joined his colleague Congressman John Carter (R-TX) in introducing legislation that provides for the establishment and maintenance of an undiagnosed diseases network, the “Charles August Long (CAL) Undiagnosed Diseases Research and Collaboration Network Act of 2011”. The congressmen were joined by families affected by undiagnosed diseases, along with two veterans’ organizations that support the creation of a network for research and collaboration on undiagnosed illnesses.
“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 identified, the easier it will become to improve the care of the patient.”
“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 “CAL Undiagnosed Diseases Research & Collaboration Network Act,” creates an undiagnosed diseases patient network database that will be maintained by the National Institutes of Health (NIH). The goal is to provide physicians with a means to search for similar cases of undiagnosed diseases while maintaining the privacy of patients. It will allow other physicians that may be handling similar cases to collaborate in order to improve patient care. The network will better describe the types and prevalence of cases of undiagnosed diseases and make available data to help determine what factors may contribute to undiagnosed diseases.
The bill is named for Charles August Long ‘Cal’ of Cedar Park, Texas, who passed away in December 2006 at the age of 5 due to an undiagnosed illness. Cal’s mother, Heather, attended today’s news conference. Also attending was James Alton of California, an undiagnosed disease patient and his parents, Gregg Alton and Caroline Loewy; AMVETS National Deputy Legislative Director Christina Roof, and VetsFirst Executive Director Heather Ansley.
NOTE: The photo attached is of Congressman Dreier and James Alton and his parents, Gregg Alton and Caroline Loewy.