Category

Events
We supported the Rare Diseases campaign that launched on Rare Disease Day (February 29th) in the Irish Independent and online at HealthNews.ie Rare Diseases looked at all things going on in the Rare Disease community from exciting treatment developments to advocating for change and recognition to shortening the diagnostic odyssey and featured insightful content from Rare Disease Ireland, EURORDIS, Rare Disease International, Science Foundation Ireland, Alexion, Alnylam Pharmaceuticals and more The full supplement is available to read here: https://www.healthnews.ie/rare-diseases/ The TSC Ireland article is available here: http://www.tinyurl.com/4erux44f
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Insights From Paediatric & Adult Epilepsy Nurses We are delighted to welcome Claire Behan and Ann Connolly two Epilepsy Advanced Nurse Practitioners based in St James’s Hospital and Tallaght University Hospital respectively. Please join us on the night for what promises to be a very informative and interesting session on a topic that is relevant to so many living with TSC. If you would like to submit a question for the speakers in advance please email info@tscireland.org When: Tues 19th March, 7-8pm Where: Online via Zoom – click the link below to view a recording of the webinar
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Save the date! When: Saturday May 11th Where: Fota Wildlife Park, Co. Cork More details to follow here and on our FaceBook page. We would love to see as many families and individuals affected by TSC as possible in Cork! Great opportunity to meet others in the same boat and have a fun day out together…..
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Part 3: Strategies for Sleep You can access the 3rd part in our Sleep Webinar series below as Dr Stacey Bissell brings us some more useful insight into how sleep is affected in TSC and useful strategies particularly around medication, work and school.
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The National Stud, Kildare We had a wonderful day out at the National Stud and Japanese Gardens in Kildare on 15th Oct. The sun shone on a beautiful crisp Oct day and definitely added to the experience! We enjoyed an interesting tour of the stud and grounds and had the chance to feed carrots to some of Irelands most famous racehorses! The playground was explored by the younger attendees. A delicious lunch was enjoyed by all in the restaurant followed by the option of trying out the new Racehorse Experience. The day was a lovely relaxed opportunity for those affected
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DEA – Dissemination of Expertise and Achievement:AIMTo create a readily accessible, active and sustainable network within and between EU countries, for healthcare practitioners treating individuals with Tuberous Sclerosis Complex.This network will facilitate the sharing of best practice within a relevant speciality as well as across disciplines when the need arises in this multi-system condition. The project aims to establish a holistic approach to the treatment of TSC and promote multi-disciplinary working across the EU. Date: 7 July 2023 Venue: The Tercentenary Hall, Trinity Biomedical Science Institute, 150-160 Pearse Street, Dublin, Ireland
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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