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ePAG visit at Children’s Hospital Sant Joan de Déu, Barcelona
July 7, 2025
Having a rare disease means spending a lot of time around doctors and hospitals. Places, that even adults will not …read more »
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 »

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ERN-RND @ern-rnd.bsky.social 7 days

#WorldBrainDay - There are many gaps in the European #Healthcare systems for rare neurological diseases - but if you could change only #OneThing to make it better, what would you choose? Find out what our clinicians, patient advocates and patient organizations would do!
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ERN-RND @ern-rnd.bsky.social 1 week

One more day till #WorldBrainDay: "What would you change in the health care system for rare neurological diseases if you could change only one thing to make it better?"

This is what ERN-RND clinician Rebecca Schuele would change: https://f.mtr.cool/mqrhizkhjs

#WorldBrainDay2025 <https://f.mtr.cool/mqrhizkhjstag/BrainHealth">#BrainHealth
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ERN-RND @ern-rnd.bsky.social 2 weeks

22 July is #WorldBrainDay: "What would you change in the health care system for rare neurological diseases if you could change only one thing to make it better?"

This is what ERN-RND clinician Vassilis Constantinides would change: https://f.mtr.cool/kkmcrksprq

#WorldBrainDay2025 https://f.mtr.cool/kkmcrksprqshtag/BrainHealth">#BrainHealth
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ERN-RND @ern-rnd.bsky.social 2 weeks

5 more days till #WorldBrainDay: "What would you change in the health care system for rare neurological diseases if you could change only one thing to make it better?"
This is what ERN-RND clinician Jana Dominguez Carral from wo#WorldBrainDay:
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ERN-RND @ern-rnd.bsky.social 2 weeks

#WorldBrainDay is coming up on July 22! "What would you change in the health care system for rare neurological diseases if you could change only one thing to make it better?"

This is what ERN-RND clinician David Gomez would change first: www.youtube.com/watch?v=ukLl...
#WorldBrainDay2025
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ERN-RND @ern-rnd.bsky.social 2 weeks

#WorldBrainDay is coming up on July 22! "What would you change in the health care system for rare neurological diseases if you could change only one thing to make it better?"

This is what our patient representative Ruth Blanco would change first: www.youtube.com/watch?v=-YWk...
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ERN-RND @ern-rnd.bsky.social 3 weeks

July 22 is #WorldBrainDay! "If you could change only one thing in the health care system for rare neurological diseases to make it better what would you choose?" This is what we asked our network.

ERN-RND clinician Julie Martinkova would change this: