News – Page 9 – ERN-RND | European Reference Network on Rare Neurological Diseases

EJP-RD survey – please take 5min to complete it

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PETITION – Call for increased emphasis on brain research in the strategic plan for Horizon Europe

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European Brain Council Election Manifesto

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Dystonia Europe survey – please participate

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EAN interviews ERN-RND coordinator Holm Graessner

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#BrainLifeGoals project grants from EFNA

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Brain, Mind and Pain #BookofEvidence for 2019-2024 EU mandate released

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Postdoc in Computational Genomics at the University Hospital Tübingen – Applications open!

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Report – First SCA Global Conference

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MoU signed between ERN-RND & EAN

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The ERNs are getting ready for the challenges of enlarging the ERNs

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Call for Proposals – Grant Opportunity for BPAN and MPAN research

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18 February 2019 | Trial readiness and registries in RND workshop report

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Rare Disease Day: a new EU platform to support better diagnosis and treatment

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The ERNs are building a common training and eLearning strategy

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ERN-RND, ZSE and Solve-RD coordinating offices on #RareDiseaseDay

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Living with ataxia and advocating around the world #RareDiseaseDay

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Working in the BRAIN-TEAM: raising awareness of rare diseases daily #RareDiseaseDay

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Being diagnosed at the centre of rare diseases in Tübingen (ZSE) #RareDiseaseDay

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Pediatric ataxias – the daily work of a clinician in Italy #RareDiseaseDay

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ERN-RND member Pr Boespflug-Tanguy & team find new Leukodystrophies gene and potential treatment

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ERN-RND short fellowship experience in Tübingen, Germany

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Full report – 4th European Reference Networks Conference

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New European Joint Programme on Rare Diseases – €100 million allocated to rare disease research

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Poster – Diagnostic flowcharts, a tool to disseminate expert knowledge on rare neurological diseases

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New #EUProtects video released by the European Commission

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Poster: “CPMS use cases in ERN-RND”

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Poster: ERN-RND – Survey research priorities

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Summary report – 4th Conference on European Reference Networks

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New ERN video and flyer for patients and healthcare professionals

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Find us on Bluesky

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

Myoclonus Dystonia often begins in childhood, yet it’s frequently mistaken for more common conditions like cerebral palsy. This misdiagnosis can delay accurate answers and effective care for years.
Learn more about the condition in our video interview with Belén Dueñas Pérez. youtu.be/HgpHRkNAwaQ
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ERN-RND @ern-rnd.bsky.social 2 weeks

💻 Upcoming #webinar on “Getting the Most Out of Physiotherapy in Dystonia”
📅 3rd March, 3:00 CET
🗣️Maarten Nijkrake, Radboud University Medical Center, Nijmegen, The Netherlands
Sign up 👉 https://t1p.de/ll1py

Joint with the and

#Physiotherapy #Dystoni#Physiotherapynhttps://t1p.de/ll1pyg/Dystonia">#Dystonian#RareDisease
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ERN-RND @ern-rnd.bsky.social 1 month

POSTPONED 💻 Upcoming #webinar on “Social and Lifestyle Issues Related to Ataxias and HSP”
📅 13th January, NEW DATE: tba
🗣️ Lotte van de Venis, Radboud University Medical Center, Nijmegen and Lori Renna Linton, Euro-HSP

Sign up 👉https://t1p.de/5nefhttps://t1p.de/5nef2a href="https://bsky.app/hashtag/webinar">#webinar

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ERN-RND @ern-rnd.bsky.social 1 month

POSTPONED 💻 Upcoming #webinar on “Social and Lifestyle Issues Related to Ataxias and HSP”
📅 13th January, NEW DATE: tba
🗣️ Lotte van de Venis, Radboud University Medical Center, Nijmegen and Lori Renna Linton, Euro-HSP

Sign up 👉https://t1p.de/5nefhttps://t1p.de/5nef2a href="https://bsky.app/hashtag/webinar">#webinar

3 1
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ERN-RND @ern-rnd.bsky.social 1 month

POSTPONED 💻 Upcoming #webinar on “Social and Lifestyle Issues Related to Ataxias and HSP”
📅 13th January, NEW DATE: tba
🗣️ Lotte van de Venis, Radboud University Medical Center, Nijmegen and Lori Renna Linton, Euro-HSP

Sign up 👉https://t1p.de/5nefhttps://t1p.de/5nef2a href="https://bsky.app/hashtag/webinar">#webinar

1
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ERN-RND @ern-rnd.bsky.social 2 months

POSTPONED 💻 Upcoming #webinar on “Social and Lifestyle Issues Related to Ataxias and HSP”
📅 13th January, NEW DATE: tba
🗣️ Lotte van de Venis, Radboud University Medical Center, Nijmegen and Lori Renna Linton, Euro-HSP

Sign up 👉https://t1p.de/5nefhttps://t1p.de/5nef2a href="https://bsky.app/hashtag/webinar">#webinar

1
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ERN-RND @ern-rnd.bsky.social 2 months

⚠️Updated time! No#webinarM CET
💻 Upcoming #webinar on “The Importance of Genetic Counselling in the Diagnostic of Rare Neurological Disorders”
📅 9th December
🗣️ Maria Judit Molnar, Semmelweis University, Buhttps://t1p.de/d825h up 👉https://t1p.de/d825h
Joint with the and

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