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

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

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

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

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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”

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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”

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

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EAN Movement Disorders Scientific Panel recommendations for COVID-19 pandemic

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Dystonia, patient advocacy and the future by Monika Benson

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

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

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Solve-RD brokerage call open

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

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

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European Commission launches COVID-19 Clinical Management Support System

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EAN Congress 2020 moves online

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ECRD 2020 moves online

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EFNA launches survey on stigma & neurological conditions

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It’s #BrainAwarenessWeek 2020

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European Reference Networks are 3 years old

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SCA Global Conference 2020 CANCELLED

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New EHA video on ERN-RND

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ARCA Global Conference 2020 CANCELLED

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ERN-RND Patient advocates meeting report, 30 January 2020

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ERN-RND Survey: “Research Priorities” for patients

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EJP RD calls for funding – ERNs only

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Find us on Bluesky

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

"Look, this is what my rare disease is about" - use our #PatientJourney document on #CervicalDystonia to quickly and easily explain to others your rare condition. Be it your employer, your doctor, your friends or the health insurance. Hear about Monika Benson's story: www.youtube.com/watch?v=1A2W...
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ERN-RND @ern-rnd.bsky.social 3 days

"National Reference Networks" - Holm Graessner shares insights at our Scientific Symposium "European Healthcare for RND Patients", Oct 28, 12:20 CET.

Registration (free of charge): https://f.mtr.cool/mpyqdaaqli
Program: https://f.mtr.cool/qxrjzcwauh
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ERN-RND @ern-rnd.bsky.social 3 days

Free #Webinar on #FrontotemporalDementia and #PPA - which stands for Primary Progressive Aphasia- today at 3 CEST with Alexa Häger on:
"Social and Lifestyle Issues Related to FTD and PPA" - to register, please click here: t1p.de/z2aca

Learn more on PPA with our short interview: tinyurl.com/3nrhcuh3
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ERN-RND @ern-rnd.bsky.social 4 days

💻 U#webinar#webinar on “Social and Lifestyle Issues Related to FTD and PPA”
📅 30th September, 3:00 CEST
🗣️ Alexa Häger, University Hospital Aachen, Germany
Sign https://t1p.de/z2acade/z2aca

Joint with the European Reference Network for Rare Neuromuscular Diseases and
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ERN-RND @ern-rnd.bsky.social 1 week

#NewbornScreeningAwarenessMonth

Learn more about newborn screening with #NewbornScreeningAwarenessMonth #ScientificPill here: erdera.org/article/harm...

...and about newborn screening for #MetachromaticLeukodystrophy in our video interview here: www.youtube.com/watch?v=pd7m...

#MLD #Leukodystrophy
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ERN-RND @ern-rnd.bsky.social 1 week

💻 U#webinar#webinar on “Social and Lifestyle Issues Related to FTD and PPA”
📅 30th September, 3:00 CEST
🗣️ Alexa Häger, University Hospital Aachen, Germany
Sign https://t1p.de/z2acade/z2aca

Joint with the European Reference Network for Rare Neuromuscular Diseases and
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ERN-RND @ern-rnd.bsky.social 1 week

Have you already heard of Lighthouse Concept? Curious to know what it is about? Then join our Symposium on October 28 at 9 CET and listen to Ines Hernando's talk to learn more about it.
Registration (free of charge) and programme:
www.ern-rnd.eu/annual-meeti...