News 2018 – ERN-RND | European Reference Network on Rare Neurological Diseases

New European Joint Programme on Rare Diseases – €100 million allocated to rare disease research

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Poster – Diagnostic flowcharts, a tool to disseminate expert knowledge on rare neurological diseases

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New #EUProtects video released by the European Commission

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Poster: “CPMS use cases in ERN-RND”

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Poster: ERN-RND – Survey research priorities

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Summary report – 4th Conference on European Reference Networks

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New ERN video and flyer for patients and healthcare professionals

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Executive Summary – 9th European Conference on Rare Diseases and Orphan Products

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ERN-RND Fellowship experience in Tübingen, Germany

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ERN-RND has affirmed the value of the Ataxia-UK guideline “Management of the ataxias towards best clinical practice” (Ataxia UK, 3rd edition, July 2016)

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ERN-RND Fellowship

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ERN-RND Annual Meeting 2018

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Solve-RD project

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MoU signed between ERN-RND & MDS-ES

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@ERN_RND is on Twitter!

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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 19 hours

Movement Disorders affect also children and therefore paediatric scales are needed - but which one to use when, what treatment in which frequency? A standardization is needed. Learn more in our interview with ERN-RND clinician Juan Dario Ortigoza Escobar www.youtube.com/watch?v=k46u...
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European Paediatric Neurology Society (EPNS) @epnsnews.bsky.social 3 days

We are delighted to announce that the application period for EPNS Visiting Teacher 2026 is now open!

For more information visit: epns.info/epns-visitin...
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ERN-RND @ern-rnd.bsky.social 1 week

#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