Michaela Winkelmann of the Association for German Huntington Support kindly shared her experience attending the recent 11th International Symposium on NA Syndromes and her article was published in the Huntington-Kurier, the Association’s magazine, December 2023 issue.

A Q&A between patients and researchers and clinicians, and a presentation on Cohen syndrome (VPS13B) were the focus of VPS13 forums 15 and 16, respectively.

Ruth Walker recently shared the good news that a slide from the Neuropathology of Neuroacanthocytosis project at the Icahn School of Medicine at Mount Sinai (NYC) was selected for the cover of the prestigious Official Journal of the International Parkinson and Movement Disorder Society.

Despina Dinca, Charity Manager for The Advocacy for Neuroacanthocytosis Patients, writes of her experience networking at a Fringe event on patient data at the Genesis 2023 conference, held in London.

Brad Salzmann's diagnosis with XK syndrome prompted the loss of a career he dearly loved, a result common to many others with XK. Read on to see how he is using his time now, including "flying high" and giving back to his community.

Several patients recently gave permission to share some happy moments.

Susan Wagner, president of Neuroacanthocytosis Advocacy USA (NA-USA) recently stumbled upon a descriptive article on acanthocytes.