sábado, 4 de octubre de 2025

RARE Neuromuscular - RARE Round-up - keeping you up-to-date

https://editions.rarerevolutionmagazine.com/html5/reader/production/default.aspx?pubname=&edid=d32456c6-3976-4478-b801-e093ee1f0d4e&pnum=62 The Advocacy for Neuroacanthocytosis Patients (NA Advocacy) is 25 years into the quest to progress understanding of the group of ultra-rare neuroacanthocytosis (NA) syndromes. With very little understood about the disease mechanisms, Ginger Irvine and her late husband Glenn, started laying the foundations from the ground up. Their work continues today.

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