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Meet us at EAN2025
June 11, 2025
Are you at this year’s EAN Congress in Helsinki? Then come and visit us at our booth (N21) in the …read more »
Review on DBS for Dystonia
June 11, 2025
Despite considerable achievements in genetics in dystonias, their response to possible treatment such as Deep Brain Stimulation (DBS) remains to …read more »
John Gerbild elected as Board Director for EURORDIS
May 19, 2025
We are happy to announce that our patient advocate John Gerbild (representative for: Ataxia/HSP) is now a newly elected Board …read more »

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ERN-RND @ern-rnd.bsky.social 3 hours

#FriedreichAtaxia (FA) is progressive, meaning what you can do keeps changing. When you think you have gotten to understand FA, something new happens - says Brona Kearney, who has been living with FA for the past 23 years.
How does this disease affect a patient's life? This is Brona's story.
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EHDN News @ehdn-news.bsky.social 6 hours

Listen to our latest podcast! www.youtube.com/watch?v=fEg4...
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EHDN News @ehdn-news.bsky.social 6 hours

Our 55th issue opens with a tribute to our much-loved and sadly missed colleague, Tim McLean. Highlights include a call to action from EHDN’s HEATED task force, clinical trial updates, and an interview with Daniel Claassen, Chief Executive Officer @ Huntington Study Group: ehdn.org/wp-content/u...
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ERN-RND @ern-rnd.bsky.social 1 day

#WorldBrainDay is coming up on July 22! We asked our network: "If you could change one thing in the health care system for Rare Neurological Diseases what would that be and why?"

This is what our patient representative Mary Kearney (Friedreich's #Ataxia) said.

#WorldBrainDay2025 #WorldBrainDay25
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ERN EuroBloodNet @erneurobloodnet.bsky.social 6 days

💻Don't miss the ERN-EuroBloodNet #ThursdayWebinar session on "Gene therapy for Pyruvate Kinase Deficiency and Congenital Dyserythropoietic Anemia Type II”!

🗓️3rd July - 17:00h CEST.
👉Registrations: eurobloodnet.eu/education/th...

#ERNeu #ERNs #HealthUnion #EU4Health #ShareCareCure #hematology
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ERN-RND @ern-rnd.bsky.social 1 week

Bye bye #EAN2025: meeting members and partners, introducing pur new postgraduate curriculum (hosted on eanCampus), talking about future projects, planning new cooperations - we had a great time in Helsinki and are looking forward to the #EAN2026 In Geneva! #EAN2026
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ERN-RND @ern-rnd.bsky.social 1 week

EAN2025 - #PublicBrainHealthDay #BrainHealthMission

I"f you could change ONE THING in the health care system for rare neurological diseases - what do you think is needed most and why?"

This is what our coordinator Holm Graessner would change first:

#ToBeContinued - more to come soon! #ToBeContinued