TSC Alert

Archive for December, 2019

Important Update about TSC Alert in 2020

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Starting in January, the TSC Alert e-newsletter will be sent out on the second Friday of the month. Furthermore, the TSC Alliance is transitioning to a new email platform in 2020. If you do not receive the January TSC Alert or have any issues with the newsletter, please let us know: tscalert@tscalliance.org.

Save the Date for the 2020 International LAM Research Conference

Hosted by The LAM Foundation, this conference attracts experts in every facet of clinical investigation and molecular and cellular biology, including clinical trialists, clinical investigators with expertise in interstitial lung disease and pleural disease, basic scientists from the pulmonary, TSC and smooth muscle communities, geneticists, and experts in lymphangiogenesis.

New Clinical Trial Finder Tool

The TSC Alliance has partnered with Clinical Trial Connect to develop a user-friendly Clinical Trial Finder Tool to help individuals and families affected by TSC participate in relevant clinical trials. You can find the tool on our website here.

Contribute to a Study About Standard Neurological Care in TSC Children

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Information about the Warsaw Medical University study: Tuberous sclerosis complex (TSC) is a disease with a very high risk of epilepsy and its comorbidities, such as intellectual disability and autistic behavior with significant impact on the daily life of families with this condition.

New Research Article Available on the TOSCA Registry for TSC

The TuberOus SClerosis registry to increase disease Awareness (TOSCA) is an international disease registry designed to provide insights into the clinical characteristics of patients with Tuberous Sclerosis Complex (TSC). The aims of this study were to identify issues that arose during the design, execution, and publication phases of TOSCA, and to reflect on lessons learnt that may guide future registries in rare and complex diseases. Read the Article