Rare Disease Report

Tuberous Sclerosis Complex: Peer-Reviewed, Published Consensus Papers

MARCH 27, 2015
Guest post by the TS Alliance

Tuberous sclerosis complex (TSC) is a genetic disorder that may affect nearly every organ system, but disease manifestations vary widely among affected individuals and some can be life threatening.  The diverse and varied presentations and progression of TSC are a challenge for optimal health care management with significant impact on cost and quality of life.  This page provides a brief summary of the latest consensus recommendations for monitoring and treating individuals with TSC. 

Healthcare professionals from around the world with expertise managing TSC met in June 2012 to update guidelines for the diagnosis, surveillance and management of TSC. The consensus reached as a result of the work before, during and after that conference has been published in the October 2013 edition of Pediatric Neurology.

The following papers are available free of charge with open access to anyone in the world.  The TS Alliance encourages sharing these links, or this page or our own page (tsalliance.org/consensus) with healthcare providers.  Any future updates to these recommendations will also be posted on this page.

Image "Patient with facial angiofibromas caused by tuberous sclerosis" by Herbert L. Fred, MD and Hendrik A. van Dijk - http://commons.wikimedia.org/wiki/File:Patient_with_facial_angiofibromas_caused_by_tuberous_sclerosis.jpg#/media/File:Patient_with_facial_angiofibromas_caused_by_tuberous_sclerosis.jpg. Licensed under CC BY-SA 3.0 via Wikimedia Commons

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