This 12th edition aims to unite clinicians, researchers, patients, families, and advocacy organizations to foster collaboration, enhance disease management, and explore innovative treatment strategies for conditions associated with pathogenic variants in the VPS13 gene family and for related disorders. These include Neuroacanthocytosis syndromes (XK disease, VPS13A disease), Cohen syndrome, VPS13C-related Parkinsonism, and VPS13D-related ataxia.

The event’s primary goal is to provide a platform for knowledge exchange. Patient and caregiver involvement will be central, ensuring their perspectives shape clinical care and future research directions.

For more information and the option to register, please visit the website.

We especially encourage young clinicians and scientists to submit an abstract.

We are looking forward to welcoming you in Lausanne!

Senior investigators - Please submit nominations for the 2025 GLENN IRVINE PRIZE by Friday 25th July.

The Glenn Irvine Prize, given in honour of the late Glenn Irvine, co-founder of the Advocacy, will be presented at this meeting:

• GBP 5,000 will be awarded to a junior investigator, to encourage them to pursue further research in the field of Neuroacanthocytosis syndromes.
• The ideal awardee will be the first author on one or more publications in the field and will demonstrate a commitment to advancing the field.
• We will consider basic science contributions on VPS13 or XK protein functions published between 2023 and 2025, and will choose the most promising candidate with respect to their potential future contributions in advancing towards a cure for Neuroacanthocytosis syndromes.
• The awardee will be invited to give a presentation at the 12th International Meeting on Neuroacanthocytosis, Cohen syndrome and other VPS13-related disorders which will take place in Lausanne, Switzerland, September 12-14th, 2025.
• Please submit nominations by July 25th to despinadinca{bei}naadvocacy.org.

Scientific board members: