News – Page 6 – ERN-RND | European Reference Network on Rare Neurological Diseases

David Marsden Award 2021 – open call for submission

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New FTD website by FTD talk team

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SCA & ARCA Global Online Conference 2020 – Abstract submission

Continue reading “SCA & ARCA Global Online Conference 2020 – Abstract submission”

Webinars on Leukodystrophies by ELA Deutschland

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Results of EFNA’s survey on stigma & neurological disorder

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EURORDIS Winter School 2021

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Share4Rare – new international patient registry for COVID-19

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2020 CEF Telecom call – eHealth open

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EAN sets up the Ean NEuro-covid ReGistrY (ENERGY)

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#BrainLifeGoals campaign on World Brain Day 2020

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NEW ePAG patient advocate for Leukodystrophies from Germany

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Research article: “COVID‑19 reveals influence of physical activity on symptom severity in hereditary spastic paraplegia”

Continue reading “Research article: “COVID‑19 reveals influence of physical activity on symptom severity in hereditary spastic paraplegia””

ERN-RND July 2020 Newsletter

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SCA & ARCA Global online Conference – registration is open

Continue reading “SCA & ARCA Global online Conference – registration is open”

EJP RD course “International Summer School on Rare Disease Registries and FAIRification of Data”

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Research article: “Features of Speech and Swallowing Dysfunction in Pre-Ataxic Spinocerebellar Ataxia Type 2”

Continue reading “Research article: “Features of Speech and Swallowing Dysfunction in Pre-Ataxic Spinocerebellar Ataxia Type 2””

Dystonia Europe & European Huntington Association receive #BrainLifeGoals project grant

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EPNS 2021, abstract submission open

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NEW Euro-HSP Facebook page

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ERN-RND June Newsletter 2020 – CORRECTION

Continue reading “ERN-RND June Newsletter 2020 – CORRECTION”

EJP RD fellowship awarded to ERN-RND member

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Research article: “Disease Progression and Prognostic Factors in Multiple System Atrophy: A Prospective Cohort Study”

Continue reading “Research article: “Disease Progression and Prognostic Factors in Multiple System Atrophy: A Prospective Cohort Study””

Research article: “Awareness of rare and genetic neurological diseases among italian neurologist. A national survey”

Continue reading “Research article: “Awareness of rare and genetic neurological diseases among italian neurologist. A national survey””

EFNA position paper on patient involvement in research

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NEW! ERN-RND introduction video

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EJP RD Networking Support Scheme (NSS) open

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ERN-RND at ECRD 2020 – summary

Continue reading “ERN-RND at ECRD 2020 – summary”

ERN-RND at EAN congress on 22-26 May 2020

Continue reading “ERN-RND at EAN congress on 22-26 May 2020”

Livre: “Huntington…et alors? Comprendre la maladie et vivre avec”

Continue reading “Livre: “Huntington…et alors? Comprendre la maladie et vivre avec””

NEW! research article: “Management of rare movement disorders in Europe: outcome of surveys of ERN-RND”

Continue reading “NEW! research article: “Management of rare movement disorders in Europe: outcome of surveys of ERN-RND””

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 2 days

July 22 is #WorldBrainDay - we asked our network what they would change in the healthcare system for RND if they could change only one thing in order to improve it.
This is what our ERN-RND clinician Kleopas Kleopa would focus on:
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ERN-RND @ern-rnd.bsky.social 4 days

#WorldBrainDayJuly22: If you could change 1 thing in the health care system for #RareNeurologicalDiseases to improve something, what would you choose and why?

This is what our ERN-RND member Mika Martikainen would prioritize:

youtu.be/WOqs5kEdNPw

#WorldBrainDay2025 #WorldBrainDay25 #BrainHealth
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ERN-RND @ern-rnd.bsky.social 5 days

#FriedreichAtaxia (FA) is progressive, meaning what you can do keeps changing. When you think you have gotten to understand FA, something new happens - says Brona Kearney, who has been living with FA for the past 23 years.
How does this disease affect a patient's life? This is Brona's story.
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EHDN News @ehdn-news.bsky.social 5 days

Listen to our latest podcast! www.youtube.com/watch?v=fEg4...
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EHDN News @ehdn-news.bsky.social 5 days

Our 55th issue opens with a tribute to our much-loved and sadly missed colleague, Tim McLean. Highlights include a call to action from EHDN’s HEATED task force, clinical trial updates, and an interview with Daniel Claassen, Chief Executive Officer @ Huntington Study Group: ehdn.org/wp-content/u...
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ERN-RND @ern-rnd.bsky.social 6 days

#WorldBrainDay is coming up on July 22! We asked our network: "If you could change one thing in the health care system for Rare Neurological Diseases what would that be and why?"

This is what our patient representative Mary Kearney (Friedreich's #Ataxia) said.

#WorldBrainDay2025 #WorldBrainDay25
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ERN EuroBloodNet @erneurobloodnet.bsky.social 2 weeks

💻Don't miss the ERN-EuroBloodNet #ThursdayWebinar session on "Gene therapy for Pyruvate Kinase Deficiency and Congenital Dyserythropoietic Anemia Type II”!

🗓️3rd July - 17:00h CEST.
👉Registrations: eurobloodnet.eu/education/th...

#ERNeu #ERNs #HealthUnion #EU4Health #ShareCareCure #hematology