📰 Calling Parents and Guardians of Children with Rare Diseases! Do you care for a child with a rare disease in Ireland or Northern Ireland? We want to hear from you. Researchers at University College Dublin are conducting a study to understand the financial, emotional, and social impact of having a child living with a rare disease – directly from the families who know it best. 💡 This survey was developed in collaboration with experts and parents of children with rare diseases across Ireland and Northern Ireland to ensure the questions reflect real-life experiences and challenges. This 30-minute anonymous survey...Read More
Judith Evers Ph.D. I am a neuroscientist; I am also a mother to an adorable son who happens to have TSC. As part of my work as a neuroscientist, I presented at Neuroscience 2024 in Chicago this October. At the same time, I used the opportunity to get an update on the TSC space and would like to tell you a little about what I learnt about research in TSC while I was there. Poster presentation at Neuroscience 2024 To give you some background Neuroscience is a conference organised every year by the Society for Neuroscience, it attracts 20,000 –...Read More
Christmas Cards On Sale Now! Featuring beautiful winter scenes by artist Theresa Horan who’s grandson Tom lives with Tuberous Sclerosis Complex. Available in a pack of 10 cards with 2 each of 5 individual designs. Cost €10 per pack (incl P&P). Order today at the link below and help our community grow! BUY NOWRead More
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
Saturday the 12th of October 2024 at The Grand Hotel Malahide, Dublin Limited spaces still available! Don’t forget to Register by emailing [email protected]. It promises to be a superb day of talks, discussion and questions and answers. Tea, coffee and refreshments on arrival plus a 2 course lunch included. See full programme below. Programme 9:00-9:45 am Registration at The Graham Bell Suite 10:00-10:15 am Introduction & Welcome Professor Colin Doherty Consultant Neurologist, St. James’s Hospital, Dublin; Ellen Mayston Bates, Professor of Epileptology, Trinity College Dublin; Head of School of Medicine, Trinity College, Dublin 10:15-11:00 TSC associated Neuropsychiatric Disorders (TAND) –...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
Sat 12th Oct, 10-4pm The Grand Hotel, Malahide Join us for our annual patient and family conference this October! We have an excellent line up of Irish and International clinicians who will present clinical information and research. They will also take part in interactive discussion panels. Refreshments including lunch, tea and coffee breaks included. Free parking available at the hotel. Meet the experts and ask questions relevant to you and your family Connect with other patients and families living with TSC Registration open and places strictly limited! To register or if you have an queries please email: [email protected]Read 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
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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