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

NEW ePAG patient advocate for Huntington’s disease from Bulgaria

Continue reading “NEW ePAG patient advocate for Huntington’s disease from Bulgaria”

Solve-RD Rare Disease Models & Mechanisms Network (RDMM-Europe)

Continue reading “Solve-RD Rare Disease Models & Mechanisms Network (RDMM-Europe)”

Jump for Dystonia competition in September

Continue reading “Jump for Dystonia competition in September”

David Marsden Award 2021 – open call for submission

Continue reading “David Marsden Award 2021 – open call for submission”

New FTD website by FTD talk team

Continue reading “New FTD website by FTD talk team”

SCA & ARCA Global Online Conference 2020 – Abstract submission

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

Webinars on Leukodystrophies by ELA Deutschland

Continue reading “Webinars on Leukodystrophies by ELA Deutschland”

Results of EFNA’s survey on stigma & neurological disorder

Continue reading “Results of EFNA’s survey on stigma & neurological disorder”

EURORDIS Winter School 2021

Continue reading “EURORDIS Winter School 2021”

Share4Rare – new international patient registry for COVID-19

Continue reading “Share4Rare – new international patient registry for COVID-19”

2020 CEF Telecom call – eHealth open

Continue reading “2020 CEF Telecom call – eHealth open”

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

Continue reading “EAN sets up the Ean NEuro-covid ReGistrY (ENERGY)”

#BrainLifeGoals campaign on World Brain Day 2020

Continue reading “#BrainLifeGoals campaign on World Brain Day 2020”

NEW ePAG patient advocate for Leukodystrophies from Germany

Continue reading “NEW ePAG patient advocate for Leukodystrophies from Germany”

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

Continue reading “ERN-RND July 2020 Newsletter”

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”

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

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

Continue reading “Dystonia Europe & European Huntington Association receive #BrainLifeGoals project grant”

EPNS 2021, abstract submission open

Continue reading “EPNS 2021, abstract submission open”

NEW Euro-HSP Facebook page

Continue reading “NEW Euro-HSP Facebook page”

ERN-RND June Newsletter 2020 – CORRECTION

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

EJP RD fellowship awarded to ERN-RND member

Continue reading “EJP RD fellowship awarded to ERN-RND member”

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

Continue reading “EFNA position paper on patient involvement in research”

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”

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...