In order to facilitate continued conversation, the Advocacy has initiated a virtual VPS13 Forum for the international community of clinicians, scientists and families dealing with chorea-acanthocytosis (now more commonly referred to as VPS13A disease) or McLeod syndrome (also known as XK disease), respectively. The forum meets every two months on Monday and the live sessions are open to all.
Read:
- Report – 20th VPS13 Forum (pdf) – 10 February 2025 – Lipid transfer and Calcium (includes updates about 12th International Symposium)
- Report – 18th VPS13 Forum (pdf) – 29 July 2024 – Nutritional challenges among people with feeding dystonia + Q&A session – expert clinicians answered questions from patients and carers
- Report – 16th VPS13 Forum (pdf) – 22 January 2024 – Research progress in VPS13B related Cohen Syndrome
- Report – 15th VPS13 Forum (pdf) – 20 November 2023 – Q&A session – expert clinicians answered patient related questions.
- Report – 14th VPS13 Forum (pdf) – 31 July 2023 – dedicated specifically to the work of the advocacy organisations. We also have available a slightly shorter version in German / deutsche Kurzversion des Berichts (pdf).
You can read previous reports from older virtual meetings in our newsletter. See issue 40, issue 39, and issue 38.
A link to upcoming meetings can be requested from kevin.peikert@med.uni-rostock.de.