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Expert recommendations for the provision of coordinated care for TSC

This excellent paper, which is well worth reading in its entirety, is written by an eminent team of TSC expert health professionals in the UK. It discusses the need to improve TSC management to ensure people with TSC have early access to appropriate treatment and preventive measures—both to minimise the long-term effects of the condition, where possible, and to support individuals and their families. Given the range of organ systems affected by TSC, its management and treatment requires coordination across a number of medical specialties over a person’s lifetime. The authors propose a comprehensive, holistic model of care to manage a range of manifestations which require management from a wide range of specialties.

TSA’s summary of this paper was included in the April 2020 issue of Reach Out and is available here:

Expert recommendations for the provision of coordinated care for TSC – TSA SUMMARY (Reach Out April 2020)

The full paper can be accessed at: https://www.frontiersin.org/articles/10.3389/fneur.2019.01116/full


This information is intended to provide some insights into recent TSC-related research.  It is not intended to, and it should not, constitute medical or other advice.  Readers are warned not to take any action without first seeking medical advice.