Technological advancements in TAND identification and treatment will also be discussed at the TSC Ireland Annual Conference on October 12th. A self complete mobile phone app version of the TAND Checklist has been developed which, it is hoped, will reduce the identification gap of TSC-associated neuropsychiatric disorders. The app will also incorporate a toolkit of consensus clinical guidelines for identification and treatment of TAND. Six distinct levels of TAND (shown in the digram below) have been described by the TAND Consortium. Below is a presentation by Liesbeth De Waele with an update on the progress of the project (17 minutes).Read More
Mary Vasseghi is a Ph.D. researcher at Trinity College Dublin and FutureNeuro and is supervised by Prof. Colin Doherty. She is conducting an in-depth research project on Tuberous Sclerosis Complex (TSC) in Ireland, which involves a widespread clinical audit as well as recommendations for future improvements in diagnosis, treatment and multidisciplinary care. This research estimates that “there should be approximately 600 individuals with a diagnosis of TSC in the Republic of Ireland.” Vasseghi-2024-Widespread-service-fragmentation-foDownloadRead More
Claire Behan will present at the TSC conference on October 12th 2024. Claire is an Advanced Nurse Practitioner, an epilepsy specialist, a Ph.D candidate and a researcher with FutureNeuro. This paper from 2022 concluded that coordination of TSC disease management in Ireland is poor and that care is often fragmented and difficult to navigate. A ‘rare disease’ is defined in Europe as a life-threatening or chronically debilitating disease affecting no more than 5 people per 10,000. An ‘orphan complex’ is a psychological character often shaped by a history of abandonment, neglect, and non-belonging. Tuberous-Sclerosis-A-Rare-Disease-with-an-Orphan-ComplexDownloadRead More
Professor Anna Jansen will present at the TSC Ireland conference on October 12th 2024. Below is a recent publication that she co-authored with Petrus de Vries and others on the subject of TSC and TAND . It contains recommendations for the screening and management of what are called TSC-Associated Neuropsychiatric Disorders (TAND). Many of these issues are often under-identified and poorly supported. *This article uses clinical, medicalised terms. Neurodivergent individuals (autistic, ADHD etc.) may find this language upsetting. Vries_et_al-2023-Journal_of_Neurodevelopmental_DisordersDownloadRead More
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...Read More
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.Read More
Understanding the impact of tuberous sclerosis complex: development and validation of the TSC-PROM | BMC Medicine | Full Text (biomedcentral.com)Read More
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)Read More
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 moreRead More
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.
