TSC Ireland at the 2026 TSC World Conference
This past summer, members of TSC Ireland, including individuals, families, and carers of children living with Tuberous Sclerosis Complex (TSC), travelled across the Atlantic to Aurora, Colorado, for the 2026 TSC World Conference.
Joined by clinicians from the dedicated TSC team at St James’s Hospital, Dublin, the Irish delegation took part in one of the largest and most influential international gatherings in the rare disease calendar.
Held every four to five years, the conference (30 July – 1 August) brought together people living with TSC, family carers, leading researchers, medical specialists, and patient organisations from every corner of the globe. Crucially, conference scholarships helped make the journey possible for families, ensuring that lived experience remained at the absolute centre of the global conversation.
Cutting-Edge Clinical Updates Across the Lifespan
Across three full days, the conference provided a deep dive into the latest international developments in TSC diagnosis, treatment, research, and lifelong care. Sessions covered every stage of the journey from early childhood through to adult care pathways.
Key topics included:
Epilepsy & Seizure Management: The latest clinical approaches to seizure control and early intervention.
TAND (TSC-Associated Neuropsychiatric Disorders): New strategies and guidance for managing the neuropsychiatric, behavioural, and emotional aspects of TSC.
Genetics & Multi-System Care: Updates on kidney and brain involvement, as well as the evolving role of mTOR inhibitors in routine care.
Emerging Research: Scientific breakthroughs and clinical trials aimed at transforming future treatment options.
Beyond the Medicine: Global Family Connections
While the clinical presentations were invaluable, the heart of the conference was about peer connection. For Irish families, it was an empowering opportunity to sit down with parents and carers from all over the world to have honest, real-world chats.
Being in a space surrounded by hundreds of people who truly understand the daily realities of living with TSC allowed families to share experiences, exchange practical tips, ask direct questions of world experts, and build friendships that stretch far beyond borders.
Strengthening Care Pathways in Ireland
For TSC Ireland and our clinical colleagues at St James’s Hospital, attending the World Conference was a vital step in bringing international best practice home. Connecting directly with global researchers and rare disease leaders helps ensure that care standards in Ireland continue to evolve alongside the best in the world.
Above all, the conference reinforced a fundamental truth: the best outcomes happen when families, clinicians, researchers, and patient organisations work hand in hand.
We are incredibly proud of everyone who represented Ireland on the global stage and grateful to everyone who helped make the trip possible. We look forward to putting these new insights, ideas, and connections into action for our community here at home!
