ERN-RND – Page 12 – ERN-RND | European Reference Network on Rare Neurological Diseases

14 April 2020 | ERN-RND webinar “recognizing atypical parkinsonism”

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EAN Movement Disorders Scientific Panel recommendations for COVID-19 pandemic

Continue reading “EAN Movement Disorders Scientific Panel recommendations for COVID-19 pandemic”

Dystonia, patient advocacy and the future by Monika Benson

Continue reading “Dystonia, patient advocacy and the future by Monika Benson”

Recording of webinar on Huntington’s disease & COVID-19 available

Continue reading “Recording of webinar on Huntington’s disease & COVID-19 available”

6-7 April 2020 | SCA Global Conference CANCELLED

Continue reading “6-7 April 2020 | SCA Global Conference CANCELLED”

Guidelines on EU Emergency Assistance in Cross-border Cooperation in Healthcare

Continue reading “Guidelines on EU Emergency Assistance in Cross-border Cooperation in Healthcare”

6 April 2020 | EHA & ERN-RND webinar: “Huntington’s disease and the Covid-19 pandemic – a difficult combination”

Continue reading “6 April 2020 | EHA & ERN-RND webinar: “Huntington’s disease and the Covid-19 pandemic – a difficult combination””

Solve-RD brokerage call open

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COVID-19: EURORDIS urges immediate action and proposes concrete solutions for rare disease patients

Continue reading “COVID-19: EURORDIS urges immediate action and proposes concrete solutions for rare disease patients”

Webinar on 6 April: “Huntington’s Disease & COVID-19 pandemic – a difficult combination”

Continue reading “Webinar on 6 April: “Huntington’s Disease & COVID-19 pandemic – a difficult combination””

European Commission launches COVID-19 Clinical Management Support System

Continue reading “European Commission launches COVID-19 Clinical Management Support System”

28-29 March 2020 | European Conference on the Diffusion of Genomic Medicine CANCELLED

Continue reading “28-29 March 2020 | European Conference on the Diffusion of Genomic Medicine CANCELLED”

25-27 March 2020 | 10th International Meeting on Neuroacanthocytosis Syndromes

Continue reading “25-27 March 2020 | 10th International Meeting on Neuroacanthocytosis Syndromes”

21 April 2020 | ERN-RND webinar “hypomyelination” (paediatric focus)

Continue reading “21 April 2020 | ERN-RND webinar “hypomyelination” (paediatric focus)”

EAN Congress 2020 moves online

Continue reading “EAN Congress 2020 moves online”

16-22 March 2020 | Brain Awareness Week

Continue reading “16-22 March 2020 | Brain Awareness Week”

ECRD 2020 moves online

Continue reading “ECRD 2020 moves online”

EFNA launches survey on stigma & neurological conditions

Continue reading “EFNA launches survey on stigma & neurological conditions”

17 March 2020 | ERN-RND webinar “X-linked adrenoleukodystrophy” (adult/paediatric focus)

Continue reading “17 March 2020 | ERN-RND webinar “X-linked adrenoleukodystrophy” (adult/paediatric focus)”

It’s #BrainAwarenessWeek 2020

Continue reading “It’s #BrainAwarenessWeek 2020”

11-14 March 2020 | RE(ACT) Congress & IRDiRC Conference

Continue reading “11-14 March 2020 | RE(ACT) Congress & IRDiRC Conference”

European Reference Networks are 3 years old

Continue reading “European Reference Networks are 3 years old”

3-6 March 2020 | NAF’s Ataxia Investigators meeting – CANCELLED

Continue reading “3-6 March 2020 | NAF’s Ataxia Investigators meeting – CANCELLED”

2-3 March 2020 | ARCA Global Conference – CANCELLED

Continue reading “2-3 March 2020 | ARCA Global Conference – CANCELLED”

3 March 2020 | ERN-RND webinar “ultrasound diagnostics for cervical dystonia”

Continue reading “3 March 2020 | ERN-RND webinar “ultrasound diagnostics for cervical dystonia””

SCA Global Conference 2020 CANCELLED

Continue reading “SCA Global Conference 2020 CANCELLED”

New EHA video on ERN-RND

Continue reading “New EHA video on ERN-RND”

ARCA Global Conference 2020 CANCELLED

Continue reading “ARCA Global Conference 2020 CANCELLED”

ERN-RND Patient advocates meeting report, 30 January 2020

Continue reading “ERN-RND Patient advocates meeting report, 30 January 2020”

29 February 2020 | Rare Disease Day 2020

Continue reading “29 February 2020 | Rare Disease Day 2020”

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ERN-RND @ern-rnd.bsky.social 4 days

Join Till Voigtländer for "Overview and First Results of the JARDIN Project " at our Symposium "European Healthcare for RND Patients", Oct 28 12:00https://f.mtr.cool/mpyqdaaqli.mtr.cool/https://f.mtr.cool/qxrjzcwauh.mtr.cool/qxrjzcwauh
Abstract: f.mtr.cool/gyblgukxvx
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ERN-RND @ern-rnd.bsky.social 5 days

One week to go for "European #Healthcare for RND Patients" - our Scientific #Symposium on October 28! Join us and register now for online participation - #free of charge: us02web.zoom.us/webinar/regi...

Learn more about the speakers and topics here: www.ern-rnd.eu/wp-content/u...
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European Academy of Neurology @ean.org 7 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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ERDERA @erdera.bsky.social 1 week

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 1 week

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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European Academy of Neurology @ean.org 2 weeks

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 2 weeks

🔬 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