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Advocacy for Neuroacanthocytosis Patients (NA Advocacy)
Advocacy for Neuroacanthocytosis Patients (NA Advocacy)
@na-advocacy.bsky.social
1 month ago
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🎉 Edition 50 is HERE! Our milestone newsletter drops just before #RareDiseaseDay2026. Packed with research updates, community stories & hope for the future.
Read now: newsletter.naadvocacy.org/6307c6red8x

#neuroacanthocytosis #VPS13Adisease #XKdisease #vps13 #RareDiseaseAdvocacy #PatientAdvocacy

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Advocacy for Neuroacanthocytosis Patients (NA Advocacy)
Advocacy for Neuroacanthocytosis Patients (NA Advocacy)
@na-advocacy.bsky.social
4 months ago
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The wait was worth it. Our Symposium report is now live. Science, stories, and shared hope.
naadvocacy.org/symposia/ - download it and pass it on!

#neuroacanthocytosis #vps13adisease #xkdisease #ResearchCollaboration #PatientAdvocacy #CohenSyndrome #vps13 #RareDisease #internationalsymposium

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Advocacy for Neuroacanthocytosis Patients (NA Advocacy)
Advocacy for Neuroacanthocytosis Patients (NA Advocacy)
@na-advocacy.bsky.social
7 months ago
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🌟 Announcing the 2025 Glenn Irvine Prize Winner! 🌟

We are delighted to award this year’s Glenn Irvine Prize to Dr Marianna Leonzino 👉 naadvocacy.org/the-glenn-ir...

#GlennIrvinePrize #RareDiseaseResearch #Neuroacanthocytosis #VPS13 #VPS13Adisease #XKdisease

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Bart-Jan.Schuman.de
Bart-Jan.Schuman.de
@schuman.de
1 year ago

Here is me trying to find somebody on #Bluesky who is interested in #RareDiseases called #Ataxia …
If things like #FriedreichAtaxia (#FA #FRDA) or #SCA or #VPS13 are things you like to talk about, then do please reach out to me!

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