Adrian Danek presented a highly instructive educational webinar on NA diseases on October 25, 2022. It is still available online.

From Rostock, Germany, Kevin Peikert provides an update on recent VPS13 Zoom Forums and invites participation in Forum 10. 

The Advocacy is seeking translators to aid with NA News and other activities.

The Advocacy's new charity manager reports on her October attendance at the Beacon Repurposing for Rare Diseases Conference.

Neuroacanthocytosis Advocacy USA, Inc. is pleased to welcome Julie Kerner to our Board of Directors. Julie's considerable experience and knowledge of drug development from research to commercial launch, especially in the arenas of Neurology, Hematology, and orphan diseases, position her to offer a unique contribution to the board. 

Mette Jolly, Charity Manager for The Advocacy, announces new Twitter and Instagram accounts for the organization, while NA-USA board member Joy Willard-Williford shares an easy way to raise funds via Facebook.

Candi DiMarzio, a board member of NA-USA, files this report on her visit to ChAc patient Mike Koutis in Canada.

Alex Irvine loves cats. She is also an accomplished artist. Click on to see her lovely watercolor contribution to NA News.

Rare Disease Day 2023 is right around the corner. Check out plans for this special day being made by Jennifer Irvine, and be thinking how you might use this day to highlight the need for research funding for and awareness of NA diseases.

Grab your calendars! You won't want to miss the 11th International Meeting on Neuroacanthocytosis Syndromes in Homburg, Germany, September 15-17, 2023, organized and chaired by Lars Kaestner of the Saarland University.