🧬 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

If you live / travel in #Scotland around 13 August, don't miss the Mercat Cottage Garden Open Day! Open for the first time with Scotland's Gardens Scheme in aid of our charity! Book & plan visit: bit.ly/SMAopen #opengarden #neuroacanthocytosis #vps13adisease #xkdisease #gardeninspiration

Our wonderful friend @sheilamaverbuch.bsky.social is supporting our charity through opening her #magnificent garden! For full details👉 instagram.com/reel/DM47rmX... #neuroacanthocytosis #VPS13Adisease #XKdisease #gardencottage #fundraiser #scotlandsgardenscheme

📰 Our latest NA News is out! Catch up on exciting research news, past and upcoming events, and how your support is making a real difference in the world of #neuroacanthocytosis syndromes. 💙 Read it here: newsletter.naadvocacy.org/1weni11t607?... #VPS13Adisease #XKdisease #VPS13Forum #RareDisease

Starting in two hours! ⌛

✨You’re invited! 12th International Meeting on Neuroacanthocytosis Syndromes, Cohen Syndrome, and VPS13-related Disorders. 🔗 Details (English, Deutsch, Español) naadvocacy.org/12th-interna... #neuroacanthocytosis #VPS13Adisease #XKdisease #CohenSyndrome #RareDiseaseCommunity

🧬Join us - 22nd VPS13 Forum: "Novel functions of VPS13 and XK proteins" (check your local time: tinyurl.com/22ndVPS13Forum) To join, message us here or email [email protected] for the Zoom link. www.linkedin.com/events/22ndv... #Neuroacanthocytosis #VPS13Forum #VPS13Adisease #XKDisease

🧬 New research uncovers how VPS13A disease (also known as chorea-acanthocytosis), a rare genetic disorder, may cause early muscle aging Full paper here: actaneurocomms.biomedcentral.com/articles/10.... #neuroacanthocytosis #vps13adisease #xkdisease #newresearch #rarediseaseresearch

📢 The latest VPS13 Forum report is out! Experts tackled real patient questions. From genetics to speech therapy, cognition, and research. 🧠 It’s a long read, but an important one. 🔗 Read now & share naadvocacy.org/wp-content/u... #RareDisease #VPS13Adisease #XKDisease

Some interesting reading! And well presented visually, too. Fundraising ROI's 2025

Starting in two hours! Check your local timings for the Forum: tinyurl.com/21stVPS13Forum #neuroacanthocytosis #vps13adisease #xkdisease #reserachforum #researchcollaboration

Meet the panel: * Julie Kerner, PhD, d * Alzbeta Mühlbäck, MD, PhD, psychiatrist * Elina Tripoliti, PhD, speech/language pathologist * Ruth H. Walker, MB, ChB, PhD, neurologist Thanks everyone for sending in your questions! #vps13adisease #XKdisease #PatientQuestions #ResearchForum

Peace, love and light this Easter to everyone celebrating and the entire world! #easter #neuroacanthocytosis #patientadvocacy #vps13adisease #xkdisease

Two weeks to go! Don’t forget to send in your question(s) as early as possible. The panel of medical experts will answer them live in the meeting. Message us here or send them to [email protected] The meeting details: fb.me/e/2XSvQ2Zvj #neuroacanthocytosis #VPS13Adisease #XKdisease #VPS13Forum

The Q&A session - back by popular demand at our 21st VPS13 Forum! Expert clinicians, researchers & therapists will answer live the questions asked by patients, families & carers. Submit them by email to [email protected] or message us here #neuroacanthocytosis #VPS13Adisease #XKdisease

Hot off the press! Alex's book is featured in the spring edition! www.facebook.com/stcolumbasch...

We had a photo shoot with Alex 📸 on her birthday week! Did you spot her book and our brand new banner yet? Book orders worldwide: www.lulu.com/shop/alexand... This is how it looks: www.youtube.com/shorts/cd84m... #neuroacanthocytosis #VPS13Adisease #XKdisease #cats #catlimericks #catlovergift

#RareDiseaseDay2025 is here. And so is NA News 👇, our regular newsletter! newsletter.naadvocacy.org/1tqgh9c5f3w1... #RareDiseaseDay #neuroacanthocytosis #vps13adisease #xkdisease #newsletter #PatientAdvocacy #raredisease

With one week to go to #RareDiseaseDay, we’re delighted to share with you the report from the 20th VPS13 #Forum, 10 Feb 2025 👉 naadvocacy.org/wp-content/u... Interesting talks about the lipid transfer and calcium + 12th International #Symposium. #neuroacanthocytosis #VPS13Adisease #XKdisease

Join us online tomorrow from 13:00 GMT (find your local time here tinyurl.com/f8v9pf3y ) to hear about interesting research on lipid transfer and calcium, and be part of the conversations after the presentations. #neuroacanthocytosis #vps13adisease #xkdisease #vps13forum #ResearchCollaboration

Come and join us on the 20th VPS13 Forum on Monday, 10 February from 13:00 GMT. Topic: Lipid Transfer and Calcium. www.linkedin.com/events/20thv... #neuroacanthocytosis #VPS13Adisease #XKdisease #researchforum #collaboration

A month on from first publishing ‘Cataclysmic limericks’, Alex had a book signing party – here is how it went! www.linkedin.com/feed/update/... #neuroacanthocytosis #VPS13Adisease #XKdisease #cats #catlovergift #catlimericks #li,ericks

Alex had some lovely feedback after launching Cataclysmic Limericks. We’re very grateful to Alex for her amazing efforts to support our charity! Check the video & get your copy here: www.lulu.com/shop/alexand... #neuroacanthocytosis #VPS13Adisease #XKdisease #cats #catlimericks #catlovergift

We are delighted to conclude 2024 with quite a unique creative project – a book of “Cataclysmic Limericks” created by Alex Irvine- now available here www.lulu.com/shop/alexand... #neuroacanthocytosis #vps13adisease #xkdisease #merrychristmas2024 #catlovers #catlimerick #publishedbook

Last week we told you about José Miguel Figueiredo's creative endeavour at Teatro do Zero, near Lisbon, Portugal. Enjoy reading about it teatrodozero.pt/se-eu-chegar... & check out the atmospheric pictures. Amazing & inspiring! #neuroacanthocytosis #choreaacanthocytosis #vps13adisease #xkdisease

Feeling generous on #GivingTuesday in the festive season? We’re making this easy, now you can donate straight through our Facebook page👇 www.facebook.com/Neuroacantho... Thank you 🙏❤️ #neuroacanthocytosis #VPS13Adisease #XKdisease #raredisease #dogood #dogoodfeelgood #grateful

Help us raising funds this #CyberMonday! If you're Christmas shopping in UK, just make sure you're going through www.giveasyoulive.com * sign in / up * choose us as preferred charity * search for your shop No idea what you shopped for, but we receive the contribution from each store. Thank you! 🙏

Here is part 2 👇with details about some of the movement disorders. There are also dozens of other rare, under-researched movement disorders. 29 November is the World Movement Disorders Day. #MoveDisorder #neuroacanthocytosis #vps13adisease #xkdisease #rarediseases

29 November is the World Movement Disorders Day and this year www.movementdisorders.org/ continues to raise awareness, fight stigma, and share stories to improve the lives of those living with movement disorders. #MoveDisorder #neuroacanthocytosis #VPS13Adisease #XKdisease #rarediseases