January 2024 Issue Current Issue Table of Contents: Epilepsy & Behavior ( Some articles in the above issue are available for free as Open Access.
Understanding the impact of tuberous sclerosis complex: development and validation of the TSC-PROM | BMC Medicine | Full Text (
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...
A prospective longitudinal study
Dr Stacey Bissell BSc, MRes, PhD Dr Stacey Bissell is an Assistant Professor in the School of Psychology, University of Birmingham. She has a specific research background in tuberous sclerosis complex, helping to develop guidelines and recommendations for TSC-Associated Neuropsychiatric Disorders (TAND) as part of the international TAND consortium. She specialises in sleep-focused and behavioural research...
What is the study about?We are wanting to collect information about changes in behaviour, emotion, physical and mental health for people with genetic syndromes, neurodevelopmental disorders and intellectual disabilities. This is so we can understand the impact of these experiences and hopefully offer better ideas of support. Who can take part? You can take part...

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.

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