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...
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...
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...
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...
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.
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...
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.
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...
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.
