The VPS13 Forum is the result of a continuous collaboration between amazing scientists, clinicians and researchers, who are keeping the conversations going about the research developments related to the neuroacanthocytosis (NA) syndromes while also looping in us, the advocacies, so we can keep passing on the latest updates to our communities of patients, their families as well as the wider public all over the world. 

Each Forum has a current topic of interest. On 29 July 2024 we heard about the nutritional challenges among people with feeding dystonia. The scientific presentations were followed by a Q&A session, where expert clinicians answered questions from patients and carers. We published a Report of the 18th VPS13 Forum (pdf). 

On 28 October, at the 19^th VPS13 Forum, we had the opportunity to hear about the latest developments in the research of VPS13C, a protein-coding gene from the same group as VPS13A. Be sure to follow our page where we’ll publish the lay-language summary report in the coming weeks. 

Collaboration in medical research is vital especially in the rare diseases field. The small cohorts are one of the major challenges of getting to the point of being able to conduct relevant clinical research. Therefore, exploring ‘neighbouring’ research areas could lead to uncover new ways to approach the challenges and to encourage the progress towards viable therapies in the research for NA syndromes. 

The 20^th VPS13 Forum is scheduled for Monday, 10 February 2025, from 14:00 CET (Central European Time), so please SAVE THE DATE. Details about the topic, agenda and how to join us will be published nearer the time on our social media. We look forward to seeing you there in 2025!