About The Event
This special event brings together families and individuals affected by Kleefstra Syndrome, carers, healthcare professionals, researchers, and supporters from across the UK and beyond.
Whether you have a family member who is newly diagnosed or have been part of the KS community for years, the conference is a chance to connect, learn, and feel supported… together.
Our 2026 conference programme is now confirmed and has been carefully designed to offer a balance of expert insight, practical support and real-life experiences, alongside plenty of time to connect with others.
You can expect:
- Expert speakers sharing insight into key topics including mental health and regression, behaviour, gastrointestinal health and occupational therapy
- Practical guidance on navigating the EHCP pathway and understanding what’s changing for families
- Breakout sessions covering areas such as sleep, speech and language, and support through teenage and adult years
- Opportunities to hear directly from families, sharing honest experiences across different life stages
- Q&A panels with professionals, giving you the chance to ask questions and explore topics further
- A supervised activity area for children and young people throughout the day
- Regular breaks and social time to connect with other families in a relaxed and supportive environment
The conference begins with an optional pre-event social evening on Friday, followed by a full day programme on Saturday and the opportunity to continue conversations informally on Sunday morning.