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Undiagnosed Disease Registry Necessary to Save Lives

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In recognition of Rare Disease Day, Congressman John Carter (TX-31), member of the Rare Disease Caucus, is working to raise awareness about a bill he has sponsored, aimed at creating a disease registry for undiagnosed illnesses. Sadly, many people with undiagnosed disease die without ever knowing what killed them.

Currently, there is no universal network for physicians handling undiagnosed disease. The CAL Network Act Congressman Carter sponsored would provide a registry for primary care physicians to collaborate and find answers for the many men, women, children, and military Service Members and Veterans who have unexplained symptoms and medical problems. It would help physicians and researchers better outline demographic factors, and essentially provide physicians who are handling undiagnosed cases to search for similar cases and to network with other physicians handling similar cases in order to find a diagnosis.

This week, for Rare Disease Day on Capitol Hill, Rep. Carter took time to remember and celebrate the life of Cal Long, a former Cedar Park child who lost his life at age five to an undiagnosed disease. Cal was the inspiration behind the Charles August Long Undiagnosed Diseases Research and Collaboration Network Act (H.R. 1591) that Congressman Carter introduced to the House in 2013.

"The story of Cal Long inspired me from the moment his mom, Heather, first came to me. Seven years since Cal's passing and Heather is no closer to discovering the killer that took her son away," said Congressman Carter. "Seven years is the average time for an undiagnosed disease to be diagnosed. Many, if not most, of those suffering do not have that kind of time. What happened to Cal will continue to happen to others unless we establish a registry like one The Cal Network Act will put forth. We must give physicians a tool that will help save lives from undiagnosed diseases."

"Having a resource like the CAL Network could have been the difference between life and death for my son. If just one child is spared the same fate suffered by Cal, then his suffering and death will not have been in vain," said Heather Long, mother of Cal Long.

"Rare and undiagnosed disease advocates must work together whenever possible, speaking loudly for our children, ourselves, our relatives and our friends impacted daily by a rare or undiagnosed disease. A divided community hurts everyone. It is imperative that we all work together within the rare disease patient community, and with our partners outside of the patient community, to affect change that will benefit all rare disease patients," said Julia Jenkins Executive Director of the Every Life Foundation for Rare Diseases.

"For many rare disease patients, obtaining a timely diagnosis is paramount to being able to receive available and potentially lifesaving treatments. One of the primary barriers preventing physicians from being able to render a timely diagnosis is their inability to collaborate with their colleagues. The CAL Network will help eliminate that barrier," said Nicole Boice, President and Founder of Global Genes.


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