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

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/4erux44fRead More

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 [email protected] When: Tues 19th March, 7-8pm Where: Online via Zoom – click the link below to view a recording of the webinarRead More

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…..Read More

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.Read More

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...Read More

Sleep in Adults with TSC Following on from the introductory webinar please join TSC Ireland and Dr Stacey Bissell for a session focussing on sleep challenges for Adults with TSC and some ideas to help manage these issues. Mon 4th Dec 8pm -8.45 Recording of Webinar available at the link below https://bham-ac-uk.zoom.us/rec/share/HqeYZ4wzTVIGc274pHr21u14EXpyCzbftm3qQSDaw2BvumKyrfPBspF7y-ll5HNz.-FOJMZdk_oMK1o-S Password: &BA*a7%+Read More

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,...Read More

Date and time: Friday, 7 July 2023 from 08:30 until 5pm. Location: Trinity Biomedical Sciences Institute152 – 160 Pearse Street D02 R590 Dublin About this event It is with great pleasure that The European Tuberous Sclerosis Complex Association in collaboration with the Tuberous Sclerosis Complex Association Ireland invite you to join us at the DEA Pit Stop in Dublin, Ireland. Hosting clinicians: Prof. Colin P Doherty MD FRCPI: Ellen Mayston Bates Professor of Epileptology and Head of School, Trinity Col- lege Dublin, Ireland Prof. Andrew Green: Professor of Medical Genetics, UCD School of Medicine and Medical Science; Consultant in Clinical...Read More

VENUE: The Irish National Stud & Japanese Gardens TIME: 12:00 PM DATE: 31st August 2019 A light meal will be provided, numbers are limited. Please RSVP no later than August 15th to [email protected]Read More