Thank you for reading this 40th edition of NA News. We are pleased to share the exciting news of the latest research, as well as inform you of opportunities to be a part of the wider NA community conversation via our online Forums and upcoming in-person symposium in Homburg, Germany in September 2023. We also share our need for news articles and photos, for translators, for trustees, and for fundraising, and highlight our presence on social media. You can also catch up on patients around the world and more. Read on...
Important and exciting recent developments in our understanding of bulk lipid transfer and NA syndromes were highlighted at the recent joint congress of German national societies (DGN) for neurology, neuropediatrics and neuropathology AKA "NeuroWeek. Read on...
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.
Social Media News New Twitter and Instagram Accounts for The Advocacy/Fundraising Made Easy by Mette Jolly & Joy Willard-Williford
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.
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.