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New Guidelines Released for Diagnosis, Surveillance and Management of Rare Genetic Disease Called Tuberous Sclerosis Complex
Date:9/23/2013

common goal of ensuring the best care for people with TSC."

"These two consensus papers will help to guide our diagnosis and management strategies for TSC until enough additional information accumulates to justify the next revision," added E. Steve Roach, MD, Editor-in-Chief, Pediatric Neurology.

"The TS Alliance is thrilled to announce these new 'gold standards' for TSC diagnosis, surveillance and management," explained Kari Luther Rosbeck, President & CEO of the TS Alliance.  "Prior guidelines were based on a 1998 TSC consensus conference, and since then, tremendous advances have been made in the field of TSC, particularly in the growth of new treatment options.  We believe these new clinical consensus guidelines will improve the quality of life of everyone touched by this disorder."

TSC is a genetic disease affecting approximately 50,000 in the United States and up to 1 million worldwide.  It causes tumors to form in vital organs, primarily the brain, heart, kidneys, skin, eyes, liver and lungs. TSC is also the leading genetic cause of both epilepsy and autism.  Currently, there is no cure.

According to Dr. Krueger, "TSC's manifestations vary widely among individuals and can sometimes even be life threatening, so accurate clinical consensus guidelines are critical to ensure optimal healthcare management. We are thankful to everyone who worked so hard at the 2012 conference."

"Gathering so many experts was crucial to ensure the updated recommendations benefited from a wide range of diverse perspectives," added Dr. Northrup. "Moreover, rapid advances are occurring in TSC treatment research, so we are excited about the new focus on the importance of comprehensive and coordinated care outlined in the guidelines."

For more details about the new TSC clinical consensus guidelines, visit

SOURCE Tuberous Sclerosis Alliance
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