Irish TSC Conference, Dublin, 2025

The TSC Conference was a warm, informative and hopeful event which brought families, clinicians and researchers together for two lively days of learning and connection at Trinity College Dublin, Ireland, 31 October – 1 November 2025. 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.

Day 1: Healthcare Professionals’ Meeting
The first day focused on the latest developments in TSC care and research. It was attended by over 60 healthcare professionals across several clinical disciplines. The day began with an important reminder of why this work matters — a powerful family perspective shared by Dr. Judith Evers, (parent of a child with TSC) set the tone for the conference that blended science with compassion.

A highlight was the keynote from Prof. Petrus de Vries, who spoke about TAND (TSC-Associated Neuropsychiatric Disorders). His session looked at the emotional, behavioural and learning challenges that many people with TSC experience, and the importance of recognising and supporting them early. Throughout the day, specialists covered the wide range of medical issues linked to TSC:

  • Updates on paediatric and adult neurology, kidney health, lung involvement (LAM) research on the blood brain barrier, and genetic testing from leading experts.
  • A look at how TSC care can be better coordinated nationally, including plans for a TSC registry, expansion of the TSC clinic and stronger collaboration between services and hospitals.
  • Panel discussions encouraged open conversation around current challenges and future care.

Day 2: Patients & Families
Saturday was designed for individuals with TSC, parents and carers. Sessions covered:

  • Easy-to-understand explanations of TAND and neurological issues across childhood and adulthood.
  • What to expect from multidisciplinary care, including insights from the St. James’ Hospital TSC team.
  • Clear overviews of kidney, lung and genetic aspects of TSC.
  • A moving personal story shared by a parent, reminding everyone of the everyday realities of living with TSC.

Ample time was provided for questions, meeting others and building support networks.

Key Takeaways
TSC affects many parts of the body, so joined-up, multi-specialist care is essential.

  • TAND awareness is increasing, helping families better understand behavioural and learning needs.
  • Ireland is moving toward more coordinated national TSC care.
  • Most importantly, the event strengthened the sense of community and shared experience among families and professionals.