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

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”

Continue reading “24 October | WEBINAR: “CPMS upcoming changes””

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

Continue reading “3-4 October | 8th Annual Symposium on ATP1A3 in Disease”

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

Continue reading “30 September | EU Health Programme High Level Conference”

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

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

Continue reading “22-26 September | International Congress of Parkinson’s Disease & Movement Disorders”

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

Continue reading “Dystonia Awareness Month”

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

Continue reading “22 July 2019 | World Brain Day”

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European Academy of Neurology @ean.org 2 days

Join Europe’s leading minds in neuroscience, innovation, and policy for the #EBRAINSSummit2025 – Transforming Brain Research and Medicine – live in Brussels on 8-11 December!

🔗 Register here: summit2025.ebrains.eu
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ERN-RND @ern-rnd.bsky.social 4 days

"MLD Treatment Eligibility - Pitch and Live Case Discussion". Nicole Wolf shares insights at our Symposium "European Healthcare for RND Patients", Oct 28 11:30 CET.
Registration: https://f.mtr.cool/mpyqdaaqli
Program: https://f.mtr.cool/qxrjzcwauh
Abstract: f.mtr.cool/gyblgukxvx
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ERDERA @erdera.bsky.social 4 days

What are European Reference Networks (ERNs) and what is their role in the rare disease ecosystem?💡In ERDERA, ERNs are central to our mission, acting as gateways to clinicians and patients across Europe 👀 https://loom.ly/FCHBS38
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ERDERA @erdera.bsky.social 5 days

Regulatory news | 🗞️ The EMA and EU partners have released the final report of the EU Repurposing Pilot, supporting new uses for off-patent medicines in rare diseases and paediatric care.
🔗 Access the report: https://loom.ly/zcpVZfg
👉 Find out more: https://loom.ly/afsfGWA
#ERDERA #RareDiseases
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ERN-RND @ern-rnd.bsky.social 6 days

Join us to learn about "National Support of ERN Members" with Pavla Doležalová at our Symposium "European Healthcare for RND Patients", Oct 28, 13:00https://f.mtr.cool/xjwsmnhdbu.mtr.cool/https://f.mtr.cool/wdrklamqcs.mtr.cool/whttps://f.mtr.cool/gyblgukxvx.mtr.cool/gyblgukxvx
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European Academy of Neurology @ean.org 6 days

Start your journey toward becoming a certified Ambassador for Neurology and Brain Health!🧠

Applications are NOW OPEN for the third edition of the EAN Advocacy Training Programme!

➡️More info on the programme, eligibility, and application: buff.ly/CxmJCr3
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ERDERA @erdera.bsky.social 7 days

🔬 Exciting news: ERDERA joins forces with the European Genomic Data Infrastructure project (GDI) to advance rare disease research and diagnosis across Europe. Launching 14 Oct in Paris. 🌍 👉 Read more: https://loom.ly/7lthRbQ
#RareDiseases #GenomicData #1MGenomes