National Brain Awareness Week 2026
Understand ERNs (European Reference Networks)
2026 TSC World Conference
Epilepsy Day 9th February 2026
Season’s Greetings
EURORDIS Rare Barometer Survey - Closed Dec 14th
This global survey initiative was open to anyone from any country in the world who is living with a rare disease, as well their family members and carers. The more people who respond and share their experiences, the more powerful our voice will be! All responses were anonymous and kept in secure storage only accessible to our research team.
COS4TAND - Research Participation Opportunity
We are looking for individuals with tuberous sclerosis complex (TSC) and their caregivers to participate in an online focus group or interview to identify important outcomes for people with TSC.
Christmas Fundraising Appeal
This Christmas, please consider a donation to TSCIreland to bring support and hope to people living with Tuberous Sclerosis Complex and their families across Ireland. Your gift will fund vital services, advocacy, and education. Together, we can strengthen our TSC community—one act of generosity at a time.
Infantile Spasms Awareness Week
Infantile Spasms Awareness Week is an important time for families affected by Tuberous Sclerosis Complex (TSC). Infantile spasms (IS), also known as West Syndrome, are a rare but serious type of seizure that typically appear in the first year of life. For children with TSC, these seizures are more common, and early recognition and treatment can make a significant difference in long-term developmental outcomes.
TSC Ireland Conferences (Dublin)2025
The 2025 TSC Conferences, organised by the TSC team in St. James’s Hospital and TSC Ireland, was a warm, informative and hopeful event. It showcased the dedication of clinicians and researchers, highlighted the strength of the TSC community, and pointed toward a more connected and coordinated future for TSC care in Ireland.
Christmas Cards 2025
Featuring beautiful winter scenes by artist Theresa Horan whos grandson Tom, lives with Tuberous Sclerosis Complex.
Family Support Grant
Our Family Support Grant provides families and individuals living with TSC with financial support for medical or learning needs up to the value of €500 per family/individual.
Minister for Health publishes the National Rare Disease Strategy 2025-2030
Minister for Health, Jennifer Carroll MacNeill TD, has today launched the National Rare Disease Strategy 2025-2030. This landmark strategy sets out a vision to improve the lives of the estimated 300,000 people living with rare diseases in Ireland.
Notes from TSC Alliance 2025 Research Conference
TSC Alliance is a major driver in TSC research and has invested more than $37 million in research since 1984. That funding has led to additional finance from other sources and through collaboration with partners resulted in major scientific breakthroughs including six FDA approved treatments.
Multi-stakeholder Tuberous Sclerosis Complex (TSC) Vision Lab workshop in St James’ Hospital
As part of Jazz pharmaceutical’s generous hands-off financial donation to St James’ Hospital Foundation, to improve TSC care in Ireland, a multi stakeholder workshop was held in St. James’ Hospital Dublin on the morning of June 6th, 2025.
Calling Parents and Guardians of Children with Rare Diseases!
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...
Stryker Limerick - Fundraiser
Paul Hession, Father to beautiful Matilda, joined his wonderful colleagues in Stryker Limerick in raising awareness and funds for TSC Ireland in April 2025.
A huge thanks to all involved!
Jazz Collaborative Working Executive Summary
A personalised model of care for developmental epileptic syndromes using Tuberous Sclerosis as an initial model of a service design in Republic of Ireland.