The 12th International Meeting for Neuroacanthocytosis Syndromes, Cohen Syndrome and VPS13-related Disorders took place in Lausanne, Switzerland from 12 to 14 September 2025. Read or download (pdf) the full report. It captures both the collaborative research updates and the patient-oriented tracks, reminding us why connection and curiosity go hand in hand.
We highly recommend to spend some time reading the separate detailed reports for each of the patient-oriented sessions, they have a lot of helpful / practical information for patients, their families and carers:
- How can occupational therapy help NA patients – Joanna Valente
- Resources for those affected by NA syndromes – Matt Bolz-Johnson
- Keep the joy of communicating & eating & drinking – Dr Elina Tripoliti.
Share these with anyone who cares about our rare syndromes’ advocacy, science, and community!
PS – Translations in German, French, Spanish and Portuguese will follow shortly!
Übersetzungen ins Deutsche, Französische, Spanische und Portugiesische folgen in Kürze!
Les traductions en allemand, français, espagnol et portugais suivront prochainement!
¡Próximamente estarán disponibles las traducciones al alemán, francés, español y portugués!
Traduções em alemão, francês, espanhol e português estarão disponíveis em breve!
The 11th International Symposium took place in Homburg (Saar), Germany between 15 and 17 September 2023. Read the detailed report of what went on and you can also download a pdf copy of it.
Previously, we have held ten symposia around the world with researchers and clinicians attending, speaking and forming alliances. Symposia have been held in Barcelona, Dresden, Ann Arbor, Stresa, Ede, Bethesda, London/Oxford, Kyoto, Montreal and Seeon and have formed the foundation of ongoing projects as well as opened doors to other work in the study of diseases of the basal ganglia.
Since 2016, our symposia have included a programme for patients, family members and carers.
You can read a summary of the 2021 Barcelona Online Symposium here.
The Advocacy supports not only the running of the symposia but also the publication of scholarly articles and textbooks arising from the meetings.
Sponsors of these symposia have been Carl H. and Elizabeth S. Pforzheimer III, Fritz Thyssen, Stiftung, High Q Foundation, Margaret Kinross Foundation, Montreal Neurological Institute and Hospital, Movement Disorder Society, Nippon Boehringer Ingelheim Limited, Novartis AG, Sanofi-Synthlabo GmbH, Pfizer AG, Imperial College Genetics Therapies Centre, agencies of the US National Institutes of Health, Glaxo Smith Kline, Neurocrine Biosciences and The Allergan Foundation.
The symposia have all been endorsed by the Movement Disorder Society.