ERN-RND – Page 14 – ERN-RND | European Reference Network on Rare Neurological Diseases

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

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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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Call to apply to join an ERN is open until 30 November 2019

Continue reading “Call to apply to join an ERN is open until 30 November 2019”

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

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

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25 September | International Ataxia Awareness Day

Continue reading “25 September | International Ataxia Awareness Day”

First call for new members to join existing 24 ERNs to be launched on 30 Sept. until 30 Nov.

Continue reading “First call for new members to join existing 24 ERNs to be launched on 30 Sept. until 30 Nov.”

French MSA patient organisation ARAMISE launches fundraising campaign

Continue reading “French MSA patient organisation ARAMISE launches fundraising campaign”

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”

EBC, EFNA & EAN sent joint open letter to EU leaders

Continue reading “EBC, EFNA & EAN sent joint open letter to EU leaders”

16 September | Rare disease perspectives in Central – Eastern Europe

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

The Ataxia Global Initiatives website is live!

Continue reading “The Ataxia Global Initiatives website is live!”

Research News: “A clinical diagnostic algorithm for early onset cerebellar ataxia”

Continue reading “Research News: “A clinical diagnostic algorithm for early onset cerebellar ataxia””

Frequently Asked Questions for the ERN call for membership

Continue reading “Frequently Asked Questions for the ERN call for membership”

Additional documentation available to prepare applications for the 2019 ERN call for membership

Continue reading “Additional documentation available to prepare applications for the 2019 ERN call for membership”

Dystonia Awareness Month

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Interview with Daria Julkowska, coordinator of the European Joint Programme on Rare Diseases

Continue reading “Interview with Daria Julkowska, coordinator of the European Joint Programme on Rare Diseases”

European Commission launches Horizon Europe public consultation

Continue reading “European Commission launches Horizon Europe public consultation”

2019 call for membership to the existing ERNs to open soon

Continue reading “2019 call for membership to the existing ERNs to open soon”

22 July 2019 | World Brain Day

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Report – European Academy of Neurology Congress 2019

Continue reading “Report – European Academy of Neurology Congress 2019”

Report – ERN-RND Annual Meeting 2019

Continue reading “Report – ERN-RND Annual Meeting 2019”

MSA Trust is accepting new and innovative project grant applications for Research Grant Round 2019

Continue reading “MSA Trust is accepting new and innovative project grant applications for Research Grant Round 2019”

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 6 days

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 7 days

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
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Parkinson's Europe @parkinsonseurope.bsky.social 7 days

We're loving #EAN2025! Come to our booth in the Neurohood area - N18 - and say hello, and pick up some Parkinson's Passports (in six languages!). ❤️ 🌷

#Parkinsons #Parkinson ‪@ean.org‬
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ERN-RND @ern-rnd.bsky.social 7 days

#EAN2025 Come and learn more about our new online medical education programme - we are in the Neurohood, N21
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ERN-RND @ern-rnd.bsky.social 7 days

#Today: Learn more about ERNs and current practices on genetic therapies in Europe at 17.25 CEST in the Scientific Theatre - the talk will be held by Kleopas Kleopa and will include practices from ERN-RND and EURO-NMD European Reference Network for Rare Neuromuscular Diseases
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ERN-RND @ern-rnd.bsky.social 1 week

#EAN2025: Meet the ERNs at the the EAN Congress. Come and find us and EURO-NMD European Reference Network for Rare Neuromuscular Diseases at the booth N21 in the Neurohood!
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ERN-RND @ern-rnd.bsky.social 1 week

Our member Lucia Laugwitz received the Memorial Fellowship of EKFS on her reasearch on #MLD - congrats Lucia!
Learn more on Lucia's research in our video interview on newborn screening for Metaleukodystrophy here: youtu.be/pd7m1OleYMA