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ERN-RND @ern-rnd.bsky.social · 02/10/2026

Join our Symposium on October 10 and learn more about the ERN-RND use case by Christina Vossler-Wolf: Register now for online participation (free of charge): us02web.zoom.us/webinar/regi... Find the whole programme here: www.ern-rnd.eu/wp-content/u...

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ERN-RND @ern-rnd.bsky.social · 02/10/2026

Join our Symposium on October 10 and learn more about the framework for multistakeholder patient registries by Nicole Wolf: Register now for online participation (free of charge): us02web.zoom.us/webinar/regi... Find the whole programme here: www.ern-rnd.eu/wp-content/u...

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ERN-RND @ern-rnd.bsky.social · 29/09/2026

Join our Symposium on October 10 and learn more about registry qualification and regulatory expectations by Kelly Plueschke: Register now for online participation (free of charge): us02web.zoom.us/webinar/regi... Find the whole programme here: www.ern-rnd.eu/wp-content/u...

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ERN-RND @ern-rnd.bsky.social · 29/09/2026

Join our Symposium on October 10 and learn more why Registries Matter for Rare Neurological Diseases by Thomas Klockgether during the KEYNOTE talk: Register now for online participation (free of charge): us02web.zoom.us/webinar/regi... The whole programme: www.ern-rnd.eu/wp-content/u...

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ERN-RND @ern-rnd.bsky.social · 25/09/2026

What are patient perspectives on registries? Mary Kearney will give us an insight during our Symposium "Registries for RND" on October 10. Join online for free and register now: us02web.zoom.us/webinar/regi... Find the programme here: www.ern-rnd.eu/wp-content/u...

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ERN-RND @ern-rnd.bsky.social · 24/09/2026

Join our Symposium on October 10 and learn more about the french MSA registry by David Bendetowicz: The French MSA Registry Register now for online participation (free of charge): us02web.zoom.us/webinar/regi... Find the whole programme here: www.ern-rnd.eu/wp-content/u...

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ERN-RND @ern-rnd.bsky.social · 16/09/2026

Join our Symposium on October 10 and learn more on the NKX2-1 Registry by Dario Ortigoza who will talk about building an International Disease Registry. Register now for online participation (free of charge): us02web.zoom.us/webinar/regi... Find the programme here: www.ern-rnd.eu/wp-content/u...

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ERN-RND @ern-rnd.bsky.social · 15/09/2026

Get the latest news on Rare Neurological Diseases with our #newsletter - this month: Postgraduate Curriculum on Ataxias & HSPs, Symposium on "Registries for RND", new publications on #NGS testing in #RND, #guanabenz on vanishing white matter and solve-RD reanalysis- www.ern-rnd.eu/mailpoet-ema...

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ERN-RND @ern-rnd.bsky.social · 15/09/2026

Join our Symposium on October 10 and learn more about Registries for Rare Neurological Diseases - online and free of charge, register now: us02web.zoom.us/webinar/regi... Programme: www.ern-rnd.eu/wp-content/u... #RND #RareNeurologicalDisease #registry #neurology #RareNeurology

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ERN-RND @ern-rnd.bsky.social · 28/08/2026

Rare disease registries are essential for advancing research and clinical trials, particularly in rare neurological diseases (RND). Join our free online scientific symposium on Registries for RND on October 10 and register: us02web.zoom.us/webinar/regi... Programme: tinyurl.com/4ptsk8pu

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ERN-RND @ern-rnd.bsky.social · 19/08/2026

On October 10 we will focus on "Registries for RND" in our Scientific +Symposium. Do you want to join us online (and free of charge)? Then register here now: us02web.zoom.us/webinar/regi... Programme: www.ern-rnd.eu/wp-content/u... #RND #RareNeurologicalDisease #registry #neurology #RareNeurology

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ERN-RND @ern-rnd.bsky.social · 05/08/2026

Learn more about registries in Rare Neurological Diseases in our Scientific #Symposium on October 10 - online and free of charge! For programme and registration click here: www.ern-rnd.eu/wp-content/u... #registry #RND #RareNeurologicalDisease

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ERN-RND @ern-rnd.bsky.social · 15/07/2026

Become an expert in Ataxias and HSPs with our UEMS certified postgraduate curriculum in the competency "Rare Neurological Diseases." Hosted at eanCampus @ean.org Interested? Visit our website for more information: lnkd.in/eKdY5jpf #Ataxia #HSP #webinar #RND

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ERN-RND @ern-rnd.bsky.social · 17/07/2026

Interested in Registries for Rare Neurological Diseases? Then join our Scientific #Symposium on October 10 - online and free of charge! To see the programme and to register click here: www.ern-rnd.eu/wp-content/u... #registry #RND #RareNeurologicalDisease #RareNeurology #ERNs

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ERN-RND @ern-rnd.bsky.social · 24/07/2026

Stay informed on the latest developments in rare neurological diseases by subscribing to our #newsletter: www.ern-rnd.eu/mailpoet-ema... With updates on standards of care, clinical decision support tools, educational webinars, opportunities to participate in research and initiatives, events.

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ERN-RND @ern-rnd.bsky.social · 22/07/2026

On #WorldBrainDay2026 we want to reflect on the remarkable progress that has been made in the field of Genetics. From small but meaningful advances to groundbreaking scientific breakthroughs, every step has brought us closer to a better future for people living with RND. youtu.be/hLP9lN4SULo?...

youtu.be

ERN-RND: World Brain Day 2026

YouTube video by ERN-RND

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ERN-RND @ern-rnd.bsky.social · 17/07/2026

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ERN-RND @ern-rnd.bsky.social · 15/07/2026

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ERN-RND @ern-rnd.bsky.social · 28/06/2026

It's launched: The -- first -- UEMS approved medical training on Rare Neurological Diseases! It consists of webinars, virtual patient cases and a stay in an expert-centre for hands-on-training.

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ERN-RND @ern-rnd.bsky.social · 28/06/2026

Today at #EAN2026 we are launching the first UEMS approved training on Rare Neurological Diseases: our #PostgraduateCurriculum. Join the talk of our coordinator Holm Graessner to learn how our modular training works, who it is for and be one of the first to apply! 10:35 CEST, Scientific Theatre

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ERN-RND @ern-rnd.bsky.social · 27/06/2026

Are you at #EAN2026? Then stop by and say hi! We are at the exhibition hall right in front of the Main Auditorium and are looking forward to meeting you.

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ERN-RND @ern-rnd.bsky.social · 27/06/2026

#EAN2026 is about to start! Come to visit us at our booth (N31) in the Neurohood Exhibition Area and learn more about our new modular #PostgraduateCurriculum

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ERN-RND @ern-rnd.bsky.social · 22/06/2026

Our new #PostgraduateCurriculum --- UEMS approved --- is about to start soon! Our coordinator Holm Graessner will present the Curriculum at this year's #EAN2026 Congress on Sunday, June 28 at 10:35 CEST! Join us to learn more about our curriculum and how you can apply! @ean.org

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ERN-RND @ern-rnd.bsky.social · 10/06/2026

What's new in the field of Rare Neurological Diseases? Our monthly #newsletter keeps you up to date with all important news, free webinars, participation calls, funding opportunities and events. www.ern-rnd.eu/mailpoet-ema...

ern-rnd.eu

ERN-RND Newsletter - June 2026

European Reference Network for Rare Neurological Diseases Newsletter

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ERN-RND @ern-rnd.bsky.social · 05/06/2026

Yesterday our ePAGs visited our expert center Motol University Hospital in Prague. Our hosts Martin Vyhnalek and Julie Novakova introduced us to the team at Motol as well as patients and patients representatives they work with.

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ERN-RND @ern-rnd.bsky.social · 12/05/2026

Our coordinator Holm Graessner will introduce our new Postgraduate Curriculum at this year’s EAN Congress. Join us on Sunday, June 28 at 10:35 CEST (Scientific Theatre)! Holm Graessner: Advancing Care for Patients with Rare Neurological Diseases – the Development of a Postgraduate Curriculum

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ERN-RND @ern-rnd.bsky.social · 12/05/2026

Get the latest news on rare neurological diseases with our monthly #newsletter: www.ern-rnd.eu?mailpoet_rou... Find news on #HuntingtonDisease, #FriedreichAtaxia, #CervicalDystonia, #NBIA, #HereditarySpasticParaplegia, #AtypicalParkinsonism, #Leukodystrophy and #FrontotemporalDementia

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ERN-RND @ern-rnd.bsky.social · 05/05/2026

After a quick break we will continue with Nicola Whiffin and "Non-coding Variants in Rare Diseases" at 11:30 CEST. Join our #SpringSchool on "Next Generation Sequencing Diagnostics for Rare Neurological Diseases": us02web.zoom.us/webinar/regi... programme here: www.ern-rnd.eu/education-tr...

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ERN-RND @ern-rnd.bsky.social · 05/05/2026

Join our free #SpringSchool now - right now on: Christian Gilissen with "Bioinformatic Tools for Diagnosing Rare Diseases" To join the talk click here: us02web.zoom.us/webinar/regi... Find the whole programme here: www.ern-rnd.eu/education-tr...

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ERN-RND @ern-rnd.bsky.social · 30/04/2026

Join Katja Lohmann and Ales Maver to learn about quality insurance and recommendations for NGS during our #SpringSchool on "Next Generation Sequencing Diagnostics for Rare Neurological Diseases” on May 6th at 9:00 CEST. Register for free: t1p.de/wsatw Programme: t1p.de/xp523

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ERN-RND @ern-rnd.bsky.social · 29/04/2026

Less than a week to go till our #SpringSchool "Next Generation Sequencing Diagnostics for Rare Neurological Diseases” starts! Join uns online from May 5-7 and register now (free of charge): us02web.zoom.us/webinar/regi... Find the programme here: www.ern-rnd.eu/education-tr...

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ERN-RND @ern-rnd.bsky.social · 28/04/2026

Interested in NGS for Ataxia and HSP? Join Erik-Jan Kamsteeg during our #SpringSchool on "Next Generation Sequencing Diagnostics for Rare Neurological Diseases” on May 7th at 9:00 CEST. Registration is free of charge: t1p.de/wsatw Programme: t1p.de/xp523

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ERN-RND @ern-rnd.bsky.social · 23/04/2026

Gain deeper insights into the role of non-coding variants in rare diseases with Nicola Whiffin during our #SpringSchool on "Next Generation Sequencing Diagnostics for Rare Neurological Diseases” on May 5th at 11:30 CEST. Register for free: t1p.de/wsatw Programme: t1p.de/xp523

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ERN-RND @ern-rnd.bsky.social · 16/04/2026

Interested in NGS for Leukoencephalopathies? Join Fanny Mochel during our #SpringSchool on "Next Generation Sequencing Diagnostics for Rare Neurological Diseases” on May 7th at 13:00 CEST. Registration is free of charge: t1p.de/wsatw Programme: t1p.de/xp523 #NGS

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ERN-RND @ern-rnd.bsky.social · 14/04/2026

Join Diana Baralle for a session on the application of RNAseq in RD during our #SpringSchool on "Next Generation Sequencing Diagnostics for Rare Neurological Diseases” on May 5th at 9:00 CEST. Registration is free of charge: t1p.de/wsatw Programme: t1p.de/xp523 #NGS #RNAseq

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Reposted by ERN-RND

JARDIN Joint Action @jardinjointaction.bsky.social · 27/03/2026

📧✨ The fourth edition of the JARDIN newsletter is coming soon! Subscrite today and be among the first to discover: 🌍 Updates from work packages 💼 Highlights from Member States 📅 ERN news 👥 Stories and developments impacting people living with #RareDiseases 👉 jardin-ern.eu/newsletter

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ERN-RND @ern-rnd.bsky.social · 09/04/2026

Join us to explore the role of Bioinformatic Tools for Diagnosing Rare Diseases with Christian Gilissen at our #SpringSchool on "Next Generation Sequencing Diagnostics for Rare Neurological Diseases" on May 5th at 10:30 CEST. Register for free: t1p.de/wsatw Programme: t1p.de/xp523

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ERN-RND @ern-rnd.bsky.social · 08/04/2026

Get the latest news on Rare Neurological Diseases with our #newsletter. This month: our upcoming #SpringSchool in May, our new guideline for neurogenic urinary and sexual symptoms, a video talk competition for patients and patient advocates and many webinars & events: www.ern-rnd.eu?mailpoet_rou...

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ERN-RND @ern-rnd.bsky.social · 07/04/2026

Gain deeper insight into the application of NGS for HD and Chorea with Larissa Arning-Bünder during our #SpringSchool on "Next Generation Sequencing Diagnostics for Rare Neurological Diseases” on May 7th at 11:30 CEST. Register for free: t1p.de/wsatw Programme: t1p.de/xp523

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ERN-RND @ern-rnd.bsky.social · 02/04/2026

Join Georgios Koutsis for a session on the application of NGS for Atypical Parkinsonian Syndromes during our #SpringSchool on "Next Generation Sequencing Diagnostics for Rare Neurological Diseases” on May 7th at 9:45 CEST. Register for free: t1p.de/wsatw Programme: t1p.de/xp523

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ERN-RND @ern-rnd.bsky.social · 31/03/2026

Join us to explore the role of snRNA Genes in Neurodevelopmental Disorders with Christel Depienne at our #SpringSchool on "Next Generation Sequencing Diagnostics for Rare Neurological Diseases" on May 5th at 12:15 CEST. Register for free: lnkd.in/dwPKM_nT Programme: lnkd.in/dng72mJU

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ERN-RND @ern-rnd.bsky.social · 26/03/2026

Gain deeper insight into NGS for Dystonia, Paroxysmal Disorders and NBIA with Michael Zech during our #SpringSchool on "Next Generation Sequencing Diagnostics for Rare Neurological Diseases” on May 7th at 12:15 CEST. Register for free: lnkd.in/dwPKM_nT Programme: lnkd.in/dng72mJU

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ERN-RND @ern-rnd.bsky.social · 25/03/2026

Do you want to know the role of #episignatures in diagnostics of rare diaseases? Then don't miss this talk by Camille Charbonnier at our #SpringSchool on "Next Generation Sequencing Diagnostics for Rare Neurological Diseases” on May 5th. Registration: lnkd.in/dwPKM_nT Programme: lnkd.in/dng72mJU

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JARDIN Joint Action @jardinjointaction.bsky.social · 03/03/2026

🦓✨ Over the past weeks, we have shared the stories of people living with a rare disease. 💜 Thank you to everyone who so generously shared their personal stories for #RareDiseaseDay. 🌐 Explore them and share them with your networks 📚 jardin-ern.eu/european-reference-ne…

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VASCERN | European Reference Network @vascern.bsky.social · 04/03/2026

For years, patients with lymphoedema were told not to exercise. The evidence says otherwise. 5 key takeaways from our recent webinar on physical activity and primary lymphoedema. Watch the full recording: youtu.be/MQxDx1m57ic?...

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ERN EuroBloodNet @erneurobloodnet.bsky.social · 17/03/2026

🗣️Patients’ rights in cross-border healthcare and the European Reference Networks #ERNs María del Mar Mañú Pereira, Scientific Coordinator of ERN-EuroBloodNet, will contribute to Session 3 of the program in her role as Vice-Chair of the TRIO of the 24 ERNs. eurobloodnet.eu/news/716/hig...

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ERN eUROGEN @erneurogen.bsky.social · 17/03/2026

🇺🇦 Paediatric Urology Webinar Series for Ukraine: Bladder Exstrophy 🗓 19 March ⏰ 18:00 CET / 19:00 EET 🎙 Prof. Alaa El-Ghoneimi, Prof. Marc-David Leclair, Assoc. Prof. Gundela Holmndahl 🔗 events.zoom.us/ev/AlnMBiNyx... #EUfunded #EU4Health #HealthUnion #RareDisease #ERNs #PedUro #SoMe4PedSurg

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ERN-RND @ern-rnd.bsky.social · 17/03/2026

Learn more about "Next Generation Sequencing Diagnostics for Rare Neurological Diseases” at our #SpringSchool on on May 5-7 Day 1 focuses on #NGS technologies, like bioinformatic tools, #episignatures, #RNAseq and non-coding variants. Registration: lnkd.in/dwPKM_nT Programme: lnkd.in/dTQ2SiTk

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ERN-RND @ern-rnd.bsky.social · 17/03/2026

💻 Upcoming #webinar on “Palliative care for leukodystrophies and other rare neurological diseases (pediatric focus)” 📅 17th March, 3:00 CET 🗣️ Nicole Wolf, Amsterdam University Medical Centers, Netherlands Sign up 👉https://t1p.de/xottw Joint with the @euronmd.bsky.social and @ean.org

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