A gentle nudge - Sheila’s #MercatCottageGarden opens as part of Scotland’s Gardens Scheme, raising funds for us.

24-25 April, 1-5pm👉https://scotlandsgardens.org/mercat-cottage-garden/
#neuroacanthocytosis #VPS13Adisease #XKdisease #eastlothian #edinburgh #opengarden #plantsale

Peace, love and light this Easter to everyone celebrating and to the entire world!

#easter #neuroacanthocytosis #patientadvocacy #vps13adisease #xkdisease

Shop Online & Raise Money For Advocacy For Neuroacanthocytosis Patients Shop online with Give as you Live Online and raise a money for Advocacy For Neuroacanthocytosis Patients the simple way.

Your online shopping could raise DOUBLE the normal donation to us until 31 March, thanks to our friends at Give as you Live. It's completely free and confidential, no extra cost - just click, shop & raise!👇
www.giveasyoulive.com//charity/naa...

#neuroacanthocytosis #vps13adisease #xkdisease

Join us for the 25th VPS13 Forum: New Clinical Developments. Some presentations will be scientific, but the forum is open, friendly, and designed for shared learning.

All details here 👇
fb.me/e/5cEaHQMK9

#neuroacanthocytosis #VPS13Adisease #XKdisease #ReseardhForum #ResearchCollaboration

Mercat Cottage Garden A creative take on the courtyard garden to provide a gardening and wildlife haven in a suburban setting.  Imaginatively and densely planted, with extensive use ...

Huge thanks to @sheilamaverbuch.bsky.social, whose stunning #MercatCottageGarden, featured in @gardenersworldmag.bsky.social, will open 24&25 April to raise funds for us!
#OpenGarden & #PlantSale: scotlandsgardens.org/mercat-cotta...
#neuroacanthocytosis #VPS13Adisease #XKdisease #eastlothian

A global moment to recognise the 300 million people living with a rare condition, including those affected by #neuroacanthocytosis syndromes. We raise our voices for equity, understanding, and better access to care.
#vps13adisease #xkdisease #rarediseaseday2026 #patientadvocacy #sharingiscaring

🎉 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

This week, we stand with the global rare disease community. #rarediseaseday2026
Awareness starts with understanding. Understanding starts with listening.
#neuroacanthocytosis #vps13adisease #xkdisease #awareness #RareDiseases #patientadvocacy #ResearchCollaboration

Not long left until #RareDiseaseDay2026 Check & see if you can get involved. Join the Global Chain of Lights or get creative and make your own window display! Share with us - collectively, we’ll improve the lives of people affected by #neuroacanthocytosis syndromes!
#VPS13Adisease #XKdisease

Cristal Alicea Malavé (right) and Professor Ruth Walker (left) at the 6th Pan American Parkinson’s Disease and Movement Disorders Congress in Houston, 13-15 February 2026. Poster title: Genetics of VPAS13A disease (chorea-acanthocytosis) in Puerto Rico.

New research! Cristal Alicea Malavé @ 6th Pan American Parkinson’s Disease & Movement Disorders Congress, Houston. VPS13A disease may be more common than expected in Puerto Rico. Awareness leads to earlier diagnosis.
#neuroacanthocytosis #VPS13Adisease #XKdisease #breakingabstracts

Don't forget to join us in a few hours, from 13:00 BST (find your local time here: tinyurl.com/24thVPS13Forum) for interesting talks, as well as the latest updates from our advocacy organisations.

#neuroacanthocytosis #vps13adisease #xkdisease #ResearchCollaboration

Proceedings of the 12th International Meeting on Neuroacanthocytosis, Cohen Syndrome, and Other VPS13-Related Disorders | Tremor and Other Hyperkinetic Movements

Delighted to share the newly published proceedings from the 12th International Meeting on #Neuroacanthocytosis, Cohen Syndrome, and Other VPS13 Related Disorders.

doi.org/10.5334/tohm...

Please share with other interest communities!

#VPS13Adisease #XKdisease #CohenSyndrome

You're invited to the 24th VPS13 Forum!

Topic: Recent insights into VPS13 / BLTP (Bridge-like Lipid Transfer Proteins) structure and function

📍 Email info@naadvocacy.org to request the full link to join the Forum.

#VPS13Forum #VPS13Adisease #XKdisease #ResearchCollaboration

Happy Christmas to those celebrating and wishing everyone a wonderful holiday season filled with peace, love, and goodwill. And a bright and prosperous 2026!

#neuroacanthocytosis #VPS13Adisease #XKdisease #HappyChristmas #raredisease #patientadvocacy

✨ Wrapping up a very busy year for our community with the 23rd VPS13 Forum Report 👉 naadvocacy.org/wp-content/u...

A look back at the science, stories, and collaboration that shaped 2025!

#neuroacnthocytosis #VPS13Adisease #XKdisease #researchcollaboration #researchforum #patientadvocacy

NA News - NA News Issue 49 - All About the 12th International Meeting! | In Memoriam: Mark Williford | Summaries of Symposium Sessions | Articles in Print | VPS13 Forums | From Patient to Pioneer | Se... Fortnightly newsletter from Advocacy for Neuroacanthocytosis Patients and NA Advocacy USA

✨ NA News #49 is here! ✨
It’s packed with updates from across our scientific and non-scientific communities.

📍 newsletter.naadvocacy.org/1drzqxthuz7?...

#Neuroacanthocytosis #VPS13Adisease #XKDisease #Fundraising #ResearchCollaboration #newsletter #RareDisease

More movement disorders defined here 👇

#VPS13aDisease #XKDisease #ResearchCollaboration

Redirecting...

Grateful for community, connection, and hope. Wishing a heartfelt Thanksgiving from all of us to all those celebrating 🍂✨

#neuroacanthocytosis #vps13adisease #xkdisease

From our sister organisation, NA Advocacy USA:
www.facebook.com/permalink.ph...

Join us online today from 13:00 (find your local time here: tinyurl.com/23rd-VPS13-F...).

📍 Email info@naadvocacy.org to request the link to join the Forum, if not already done so.

#vps13forum #neuroacanthocytosis #internationalsymposium #vps13adisease #xkdisease #ResearchCollaboration

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

Trustees’ Week 2025 For Trustees’ Week 2025, we’re focusing on good governance.

For #TrusteesWeek2025, we’re taking a moment to celebrate those who help steer our charity with wisdom, care, and unwavering commitment. Thank you for showing up, speaking up, and standing with us!

#neuroacanthocytosis #VPS13ADisease #XKDisease
www.ncvo.org.uk/get-involved...

You're invited! News & Impressions from the 12th International Meeting in Lausanne.
📍 Email info@naadvocacy.org to request the link to join the Forum.

#VPS13Forum #neuroacanthocytosis #InternationalSymposium #VPS13Adisease #XKdisease #ResearchCollaboration

🧬 The 22nd VPS13 Forum Report is published!
👉 Latest science on VPS13 & XK proteins
👉 Updates on our Strategic Plan
👉 Support for young scientists.

📖 Read here: naadvocacy.org/wp-content/u...

#neuroacanthocytosis #vps13adisease #xkdisease #ResearchCollaboration #ResearchForum

Day 3 (last) @ 12th International Meeting on Neuroacanthocytosis, Cohen syndrome and other VPS13-related disorders, was on Sunday, 14 September 2025.

#neuroacanthocytosis #vps13adisease #xkdisease #ResearchCollaboration #patientexperience #PatientAdvocacy #patientvoice

Day two @ 12th International Meeting on Neuroacanthocytosis, Cohen syndrome and other VPS13-related disorders.
It's not only the scientists who are working hard these three days. Our patients, family and carers are just as busy!
#neuroacanthocytosis #vps13adisease #xkdisease #patientadvocacy

We are on! The 12th International Meeting on Neuroacanthocytosis, Cohen syndrome and other VPS13-related disorders is live in Lausanne since yesterday!
#vps13adisease #xkdisease #neuroacanthocytosis #ResearchCollaboration

We’re honoured that Rare Revolution Magazine featured us in their latest edition, Rare neuromuscular. Huge thanks for recognising our journey & amplifying patient voices.

📰 Read articles👉https://bit.ly/From-The-Ground-Up

#RareRevolution #Neuroacanthocytosis #vps13Adisease #XKdisease

🌟 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