In September, the NA community came together with researchers, clinicians, and our colleagues from the Cohen syndrome community for the 12th International Symposium on Neuroacanthocytosis Syndromes, Cohen Syndrome and other VPS13-related Disorders. Hosted at Jules-Gonin Eye Hospital in Lausanne, Switzerland, the three-day event brought together over 50 scientists, researchers and clinicians alongside 15 patients, family members and carers for a weekend of connection, discovery and hope. 

The symposium was a true collaboration between our communities, reflecting the shared biology that links VPS13A, XK, and the other VPS13-related conditions. By bringing together expertise across these rare diseases, we're able to learn from each other's experiences and accelerate progress for everyone affected. 

One of the important aspects of this year's meeting was its dual-track format. While researchers gathered for intensive scientific sessions exploring everything from lipid transport mechanisms to animal models and potential therapies, a parallel programme offered patient-oriented sessions on occupational therapy, mental health resources, and speech and swallowing support. There were also unique offerings like Reiki sessions and a powerful theatre performance that reminded us all that living with NA syndromes is about so much more than medical symptoms. 

The scientific programme featured two inspiring keynote lectures that explored VPS13 proteins as a category of diseases linked by disrupted lipid transport. Researchers from around the world shared their latest findings through presentations and poster sessions, building a clearer picture of how these conditions develop and how we might one day treat them. The energy in the room was palpable and it felt like each presentation added another piece to the puzzle. 

For our patients and families, the weekend was both informative and uplifting. The practical sessions offered tools and strategies that can be implemented immediately, while simply being together with others who truly understand the journey provided its own form of support. The connections made in Lausanne will continue. 

You can read / download the full report here: https://naadvocacy.org/wp-content/uploads/2025/11/REPORT-12th-Symposium-Lausanne-12-14-Sep-2025.pdf 

As the meeting came to a close, we were thrilled to hear the announcement that the 13th International Symposium will take place in Warsaw, Poland in 2027. We're already looking forward to gathering again, continuing our work, and welcoming newcomers to our community. 

Thank you to everyone who made this symposium possible, the organisers, speakers, attendees, and supporters! 

Together, we're making real progress.