The response was overwhelmingly positive, with participants rating the sessions exceptionally highly and writing comments such as "invite us again!" and "great job!" 

The mental health session, speech and communication support, and occupational therapy talks stood out as particularly valuable, with several people noting they found "all informative and well done." 

José-Miguel's theatre performance also resonated deeply, with multiple attendees highlighting it as a powerful and memorable part of the weekend. 

The recurring theme was clear: practical, compassionate guidance delivered by experts who truly understand the journey makes an enormous difference. 

What participants want more of tells us just as much as what they loved. Physical therapy, gait and balance support, and dietary advice emerged as requests for future programmes. Several attendees suggested adding sessions focused specifically on tics in VPS13A and gastrointestinal issues. There was also an interest for more interactive elements such as group sessions where patients and families can share experiences directly with researchers, and dedicated time for caregivers to connect with each other and discuss their own wellbeing without patients present. 

We also heard feedback about the need for more XK-specific information and a call to progress the NA patient registry. One participant reminded us that while we celebrate what we've achieved, there's still urgent work ahead! 

Others suggested making parts of future symposia available via Zoom for family members who can’t travel, ensuring even broader access to this vital information. 

The feedback forms remind us why we do this work: to listen, to learn, and to keep improving. We're grateful to everyone who took the time to share their thoughts, and we're already thinking about how to incorporate these ideas into our next gathering in Warsaw. 

Your voices shape the future of these meetings, and we're committed to making each one better than the last. 

Memories of the Symposium - feedback forms, our notepads, the patient-oriented programme and the thoughts captured during the working groups session