Past Events 2019 – ERN-RND | European Reference Network on Rare Neurological Diseases

17 December | ERN-RND webinar “non-progressive congenital ataxia”

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16 December | Solve-RD webinar “RD-Connect GPAP – advanced platform features”

Continue reading “16 December | Solve-RD webinar “RD-Connect GPAP – advanced platform features””

9 December | Solve-RD webinar “RD-Connect GPAP – basic analysis”

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6 December | Journée Nationale Maladie de Huntington

Continue reading “6 December | Journée Nationale Maladie de Huntington”

3 December | ERN-RND webinar “Neuroacanthocytosis syndromes, a rare chorea”

Continue reading “3 December | ERN-RND webinar “Neuroacanthocytosis syndromes, a rare chorea””

27-29 November | Annual Meeting DASNE

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26 November | 5th BRAIN-TEAM patient organisations day

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14-16 November | International Ataxia Research Conference (IARC) 2019

Continue reading “14-16 November | International Ataxia Research Conference (IARC) 2019”

5 November | ERN-RND webinar “Clinical Features of Ataxia”

Continue reading “5 November | ERN-RND webinar “Clinical Features of Ataxia””

29-30 October | Organising & maximizing rare disease biological sample data in biobanks

Continue reading “29-30 October | Organising & maximizing rare disease biological sample data in biobanks”

23-25 October | Training course: Quality assurance, variant interpretation and data management in the NGS diagnostics era

Continue reading “23-25 October | Training course: Quality assurance, variant interpretation and data management in the NGS diagnostics era”

24 October | WEBINAR: “CPMS upcoming changes”

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24 October | WEBINAR: “Diagnostic imaging in NMD: the basics”

Continue reading “24 October | WEBINAR: “Diagnostic imaging in NMD: the basics””

3-4 October | 8th Annual Symposium on ATP1A3 in Disease

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3 October | World MSA Day

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Dystonia Awareness Month | September 2019

Continue reading “Dystonia Awareness Month | September 2019”

30 September | EU Health Programme High Level Conference

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26-27 September | Nationale Konferenz zu Seltenen Erkrankungen (NAKSE)

Continue reading “26-27 September | Nationale Konferenz zu Seltenen Erkrankungen (NAKSE)”

23-27 September | International Summer School on Rare Disease Registries and FAIRification of Data

Continue reading “23-27 September | International Summer School on Rare Disease Registries and FAIRification of Data”

22-26 September | International Congress of Parkinson’s Disease & Movement Disorders

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25 September | International Ataxia Awareness Day

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17-21 September | 13th European Paediatric Neurology Society (EPNS) Congress

Continue reading “17-21 September | 13th European Paediatric Neurology Society (EPNS) Congress”

20-21 September | 6th International Meeting on Spastic Paraparesis and Ataxia

Continue reading “20-21 September | 6th International Meeting on Spastic Paraparesis and Ataxia”

16 September | Rare disease perspectives in Central – Eastern Europe

Continue reading “16 September | Rare disease perspectives in Central – Eastern Europe”

22 July 2019 | World Brain Day

Continue reading “22 July 2019 | World Brain Day”

10-12 July | 3rd EAN Task Force for Rare Neurological Diseases Teaching Course

Continue reading “10-12 July | 3rd EAN Task Force for Rare Neurological Diseases Teaching Course”

29 June – 2 July 2019 | 5th Congress of the European Academy of Neurology

Continue reading “29 June – 2 July 2019 | 5th Congress of the European Academy of Neurology”

29 June 2019 | Dystonia Today – special session at the EAN Congress 2019

Continue reading “29 June 2019 | Dystonia Today – special session at the EAN Congress 2019”

29 June | Rare Neurological Diseases for Understanding nervous system functions & dysfunctions, 5th Congress of the EAN 2019

Continue reading “29 June | Rare Neurological Diseases for Understanding nervous system functions & dysfunctions, 5th Congress of the EAN 2019”

26 June | EJP-RD WP17 focus group meeting

Continue reading “26 June | EJP-RD WP17 focus group meeting”

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 5 days

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 7 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 2 weeks

#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 2 weeks

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 3 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 3 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