Category

Research
‘Stepping into the shoes of young people & families with rare renal disorders moving between child and adult services.’ This research project is being undertaken Melissa Kinch based in CHI Crumlin and UCD as part of her PhD project. “We are looking for volunteers living with a rare kidney disease (including TSC) to share their experiences of moving between child and adult health services who are:– Young people aged between 18-24 years old Parents/caregivers of young people whohave moved from child to adult services” -We also wish to recruit young people age 12-17 and parents/caregivers to look at their experiences...
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An exciting opportunity to take part in TSC specific research! 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 and specialises in sleep-focused and behavioural research with children with TSC, but also conducts research that focuses on caregiver wellbeing and family lived experiences. She is leading this research project which is open to Irish TSC families. See further details below: Understanding caregiver experiences of sleep management difficulties inindividuals with tuberous sclerosis complexAims of the studyThe main aim of this study is to document current...
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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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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 with children with TSC, but also conducts research that focuses on caregiver wellbeing and family lived experiences. Mon 6th Nov; 7.00pm – 7.45pm (20-minute presentation and 25-minute Q&A) This webinar will introduce the importance of sleep, understanding sleep in the context of TSC (e.g. epilepsy,...
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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 if you are a parent or carer of an individual diagnosed with either a genetic syndrome, autism and/or an intellectual disability. The person you care for must be at least one year old. What will you ask me? We will ask you to complete a...
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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
Rare Disease Day 2024
March 1, 2024