TOP STORY - Medical, Science, and Patient Communities Gather in Germany
Successful 11th International Meeting on Neuroacanthocytosis Diseases Held in Homburg, Germany
by Lars Kaestner

The entrance in the campus of the Saarland University Hospital of Saarland University at Homburg/Saar, Germany. The 11th International Meeting on Neuroacanthocytosis Syndromes was held on September 15th–17th, 2023, at the campus of the Saarland University Hospital of Saarland University at Homburg/Saar, Germany. The conference followed the tradition of the previous ten international symposia; the last in-person meeting was the 9th meeting held in Dresden, Germany in March 2018, followed by an online meeting in March 2021 organized by colleagues from Barcelona.


The conference focused primarily on the disease-related proteins, VPS13A and XK, which are involved in bulk lipid transfer at membrane contact sites. They closely interact forming a protein complex at the contact sites between the endoplasmic reticulum and the cellular membrane system. VPS13A and the other VPS13 proteins (VPS13B-D) belong to the newly acknowledged superfamily of bridgelike lipid transfer proteins (BLTPs). Mutations of the other VPS13 genes cause either neurodegenerative (VPS13C,D) or neurodevelopmental (VPS13B) disorders. While the underlying pathophysiology is not yet known, it is possible that VPS13A and XK diseases, as well as the related conditions, are part of a new group of disorders with a common mechanism of impaired bulk lipid transport.


A total of approximately 20 oral communications were presented in five scientific sessions, accompanied by a keynote lecture by Prof. Adrian Danek entitled “Neuroacanthocytosis syndromes at 70: a term to be retired?”  A “Poster-Blitz” session introduced the top seven posters. The 2023 “Glenn Irvine Prize” was given to Dr. Kevin Peikert who gave the prize associated lecture. The panel discussion about “Patient registries, international cooperation & future perspectives” continued the positive developments of the previous meetings regarding the participation and contributions of patients, their families, and caregivers.


A special session regarding red blood cell-related research was a joint session between the 11th International Meeting on Neuroacanthocytosis Syndromes and the “EVIDENCE” project, a doctorate training program funded by the European Community. Further funding bodies include the German Research Foundation (DFG) the Greater Region (consisting of ‘Lorraine’ in France, ‘Wallonia’ in Belgium, ‘Saarland’ and ‘Rhineland-Palatinate’ in Germany as well as ‘Luxembourg’) and the Karlsberg Brewery (Homburg/Saar).




This summary was taken from the introduction to the actual article. You may find the full proceedings published in Tremor and Other Hyperkinetic Movements at You may also enjoy a summary of the proceedings in layman's terms (with photos) found at The Advocacy's website:


In the meantime, please enjoy a gallery of photos from the meeting, including photos of a unique tree top experience in the Black Forest. Use the arrows to scroll back and forth.

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11th Symposium for Neuroacanthocytosis Syndromes, group photo of all delegates present
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