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Diagnostic criteria
In 2021, the International Tuberous Sclerosis Complex Consensus Group reviewed prevalence and specificity of TSC-associated clinical manifestations and updated the TSC diagnostic criteria published in 2013. Clinical features of TSC
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Navigate TSC
From diagnosis through the lifespan learn how to proactively navigate medical and non-medical challenges for both those with TSC and their caregivers, while gaining insights from the lived experience of
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The TSC Alliance announces the retirement of Chief Scientific Officer Steven L. Roberds, PhD.
The TSC Alliance announces the retirement of Chief Scientific Officer Steven L. Roberds, PhD, at the end of December 2026. In preparation for this transition, effective January 1, 2026, Dean
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Update on TSCRP Funding
UPDATE (5/5/25) Dear TSC community members, The TSC Alliance and our grassroots volunteers across the country continue to strongly advocate for continued federal funding for tuberous sclerosis complex (TSC) research
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Additional Resources
Brain & Epilepsy Organizations Canadian Epilepsy Alliance: www.epilepsymatters.com International Bureau for Epilepsy: www.ibe-epilepsy.org Epilepsy Foundation: www.epilepsyfoundation.org BC Epilepsy Society: www.bcepilepsy.com Montreal Neurological Institute and Hospital: www.mni.mcgill.ca Childrens Neurology: www.childneurologysociety.org Epilepsy
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Organ & Tissue Donation
Biosample Repository and Natural History Database The TSC Natural History Database collects clinical data used to document the impact of TSC on a person’s health, over his or her lifetime.
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Research conferences
By bringing together researchers from different disciplines and representing basic, translational, and clinical science, TSC Alliance-hosted research conferences provide a truly unique space to foster collaborations, spark new ideas and
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Bcureful travel & lodging assistance
The Bcureful Travel Fund® at the TSC Alliance underwrites the TSC Travel and Lodging Patient Assistance Program, which is administered by the National Organization for Rare Disorders (NORD). This travel
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Neuropsychological issues in TSC
Approximately 45% to 50% of people with tuberous sclerosis complex (TSC) develop intellectual disabilities. However, profiles of strengths and weaknesses are highly variable person-to-person and are often very uneven within
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Mood and anxiety difficulties in TSC
The rates of mood and anxiety symptoms and disorders are very high in tuberous sclerosis complex (TSC), often arising in adolescence or adulthood. Difficulties in this cluster are often identified