News – Page 7 – ERN-RND | European Reference Network on Rare Neurological Diseases

EFNA position paper on patient involvement in research

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NEW! ERN-RND introduction video

Continue reading “NEW! ERN-RND introduction video”

EJP RD Networking Support Scheme (NSS) open

Continue reading “EJP RD Networking Support Scheme (NSS) open”

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””

May is Huntington’s Disease Awareness Month

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ERN-RND May 2020 Newsletter

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Research article: “Cerebrospinal Fluid YKL-40 and Chitotriosidase Levels in Frontotemporal Dementia Vary by Clinical, Genetic and Pathological Subtype”

Continue reading “Research article: “Cerebrospinal Fluid YKL-40 and Chitotriosidase Levels in Frontotemporal Dementia Vary by Clinical, Genetic and Pathological Subtype””

Research article: “Teaching Video NeuroImages: Palatal tremor associated with SPG7 variants”

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ERN Newsletter – April 2020

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Rare Barometer survey on rare disease patients’ experience of COVID-19

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Research article: “Longitudinal dynamics of mutant huntingtin and neurofilament light in Huntington’s disease: the prospective HD-CSF study”

Continue reading “Research article: “Longitudinal dynamics of mutant huntingtin and neurofilament light in Huntington’s disease: the prospective HD-CSF study””

Research article: “Driving Performance in Patients With Idiopathic Cervical Dystonia; A Driving Simulator Pilot Study”

Continue reading “Research article: “Driving Performance in Patients With Idiopathic Cervical Dystonia; A Driving Simulator Pilot Study””

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”

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

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

Solve-RD brokerage call open

Continue reading “Solve-RD brokerage call open”

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”

EAN Congress 2020 moves online

Continue reading “EAN Congress 2020 moves online”

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”

It’s #BrainAwarenessWeek 2020

Continue reading “It’s #BrainAwarenessWeek 2020”

European Reference Networks are 3 years old

Continue reading “European Reference Networks are 3 years old”

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”

Find us on Bluesky

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ERN-RND @ern-rnd.bsky.social 6 hours

Get the latest news on rare neurological diseases with our monthly #newsletter: www.ern-rnd.eu?mailpoet_rou...

Find news on #HuntingtonDisease, #FriedreichAtaxia, #CervicalDystonia, #NBIA, #HereditarySpasticParaplegia, #AtypicalParkinsonism, #Leukodystrophy and #FrontotemporalDementia
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ERN-RND @ern-rnd.bsky.social 1 week

After a quick break we will continue with Nicola Whiffin and "Non-coding Variants in Rare Diseases" at 11:30 CEST.

Join our #SpringSchool on "Next Generation Sequencing Diagnostics for Rare Neurological Diseases": us02web.zoom.us/webinar/regi...

programme here: www.ern-rnd.eu/education-tr...
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ERN-RND @ern-rnd.bsky.social 1 week

Join our free #SpringSchool now - right now on:
Christian Gilissen with "Bioinformatic Tools for Diagnosing Rare Diseases"

To join the talk click here: us02web.zoom.us/webinar/regi...

Find the whole programme here: www.ern-rnd.eu/education-tr...

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View post by ERN-RND on Bluesky

ERN-RND @ern-rnd.bsky.social 2 weeks

Join Katja Lohmann and Ales Maver to learn about quality insurance and recommendations for NGS during our #SpringSchool on "Next Generation Sequencing Diagnostics for Rare Neurological Diseases” on May 6th at 9:00 CEST.

Register for free: https://t1p.de/wsatw
Programme: https://t1p.de/xp523
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ERN-RND @ern-rnd.bsky.social 2 weeks

Less than a week to go till our #SpringSchool "Next Generation Sequencing Diagnostics for Rare Neurological Diseases” starts! Join uns online from May 5-7 and register now (free of charge): us02web.zoom.us/webinar/regi...

Find the programme here: www.ern-rnd.eu/education-tr...
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ERN-RND @ern-rnd.bsky.social 2 weeks

Interested in NGS for Ataxia and HSP? Join Erik-Jan Kamsteeg during our #SpringSchool on "Next Generation Sequencing Diagnostics for Rare Neurological Diseases” on May 7th at 9:00 CEST.

Registration is free of charge: https://t1p.de/wsatw
Programme: https://t1p.de/xp523
View post by ERN-RND on Bluesky

ERN-RND @ern-rnd.bsky.social 3 weeks

Gain deeper insights into the role of non-coding variants in rare diseases with Nicola Whiffin during our #SpringSchool on "Next Generation Sequencing Diagnostics for Rare Neurological Diseases” on May 5th at 11:30 CEST.

Register for free: https://t1p.de/wsatw
Programme: https://t1p.de/xp523

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