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Publications
Read the inspiring story of our wonderful Mary Vasseghi and the superb research she is conducting on TSC in Ireland with Future Neuro. Mary is a key figure in our TSC Ireland committee and is doing exceptional work to improve the lives of everyone in Ireland living with TSC. Rare Disease Day 2024 – FutureNeuro (futureneurocentre.ie) Watch this video for more about Mary’s journey in the world of TSC research 🌍On #RareDiseaseDay, we stand with the 300 million people worldwide living with rare diseases. Meet @VasseghiMary, a trailblazer in Tuberous Sclerosis Complex (TSC) research in Ireland💙https://t.co/tsEcEuDZyi@rarediseaseday @scienceirl @TSC_Ireland @gastaut @tcddublin
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January 2024 Issue Current Issue Table of Contents: Epilepsy & Behavior 樂威壯 (epilepsybehavior.com) Some articles in the above issue are available for free as Open Access.
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Understanding the impact of tuberous sclerosis complex: development and validation of the TSC-PROM | BMC Medicine | Full Text (biomedcentral.com)
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Background: Rare diseases (RDs) are often complex, serious, chronic and multi-systemic conditions, associated with physical, sensory and intellectual disability. Patients require follow-up management from multiple medical specialists and health and social care professionals involving a high level of integrated care, service coordination and specified care pathways. Designing rare disease care pathways in the Republic of Ireland: a co-operative model | Orphanet Journal of Rare Diseases | Full Text (biomedcentral.com)
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A prospective longitudinal study https://onlinelibrary.wiley.com/doi/pdfdirect/10.1111/dmcn.15765
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deVries et al. International consensus recommendations for the identification and treatment of tuberous sclerosis complex-associated neuropsychiatric disorders (TAND), Journal of Neurodevelopmental Disorders (September 2023) Click here to learn more
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TSC Ireland

TSC Ireland was established in 2015 and registered as a charity later that year. The founding members were parents of young children with TSC who recognised the need for an Irish organisation that would support, inform and advocate for the TSC community here.

Recent Articles

TSC & Sleep Research Project – Take Part!!
May 23, 2024
Rare Disease Day 2024
March 1, 2024
Tuberous Sclerosis Complex & Epilepsy Management Across the Lifespan
March 1, 2024