Reports from 15th and 16th VPS13 Forums
Busy times since the previous NA News! Two VPS13 Forums were held during this time.
by Despina Dinca

Meeting report cover for 15th VPS13 Forum - special edition with Q&A session from patients answered by clinicians and researchers - November 2023The 15th VPS13 Forum on 20 November 2023 was a special patient-oriented Q&A session. Many NA relevant topics were covered such as: dysphagia, sleep issues, weight loss, deep brain stimulation, CRISPR research, and bruxism. The Forum was well attended not only by clinicians and researchers, but also by patients or their family members or carers from around the world. we captured all of these in detail in our full report of the 15th VPS13 Forum. Please read and share it with others who may find the information useful. And if you have any questions for future Forums, email them to us!







Cover of the 16th VPS13 Forum dedicated to the research progress in VPS13B related Cohen Syndrome - 22 January 2024The 16th Forum on 22 January 2024 our NA syndromes community was joined by the communities of those interested and affected by the Cohen Syndrome (CS), caused by mutations in VPS13B gene.

While the clinical manifestations are rather different from VPS13A and XK diseases, there are some interesting observations in the way the research progressed throughout the past couple of decades.

Dr Muhammad Ansar (University of Lausanne, Switzerland) kindly organised the presentations and co-hosted the Forum with Dr Kevin Peikert (University of Rostock, Germany). The details can be found on our full report of the 16th VPS 13 Forum.


For those less familiar with our Forums, these are regular online meetings where clinicians, researchers and patients, their families & carers are keeping the conversations going on latest news and updates in the world of NA syndromes.

Although sometimes the scientific discussions may be a bit challenging to follow for the non-medical public, we will make these accessible in lay language as soon as possible after the meeting.


We publicise the details for joining on our social media channels, so keep an eye out nearer the time of the meeting. Alternatively, you can ask to be included on the Forum’s mailing list by emailing Dr Kevin Peikert.

Next meetings coming up in 2024: 29 April, 29 July and 28 October. Mark your calendars now!


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