Since the inception of the Advocacy for Neuroacanthocytosis Patients in 2001, nine symposia have been held around the world with everyone who knew anything about NA attending, speaking and forming alliances with other clinicians and researchers. They have been the foundation of ongoing projects in the field and have opened doors to other work in the area of study of diseases of the basal ganglia. The last two have included a programme for patients/family members and carers.
The first symposium was organised in 2002 by Dr Adrian Danek in the idyllic setting of a monastery in Seeon, Bavaria. In 2005 the symposium was hosted by the Montreal Neurological Institute and Hospital and this was was followed by a meeting in Kyoto in 2006 at the Kyoto Prefectural University of Medicine. The 2008 symposium was held at the Institute of Neurology, University College London and the Wellcome Centre for Human Genetics, University of Oxford. The fifth symposium was held in Bethesda, Maryland in the US in 2010 in conjunction with the NBIA, a group supporting research in Neurodegeneration with Brain Iron Accumulation. A sixth meeting was held in Ede, The Netherlands in October 2012, also in conjunction with the NBIA group. Reviews of individual symposia can be found in Newsletter Issues; click on locations. The third joint meeting with NBIA was held in Stresa, Italy 31 October-1 November 2014 where over 120 participants shared new information about the two diseases. The most recent meeting was held in Ann Arbor Michigan USA May 13-15 2016. The next meeting was held in Dresden, Germany, March 23-25 2018. The tenth meeting was held on zoom hosted by Barcelona March 10-12 2021. The eleventh symposium will take place in Homburg, Saarland, Germany on 15-17 September 2023.
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.