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

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

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

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

Continue reading “New ERN video and flyer for patients and healthcare professionals”

Executive Summary – 9th European Conference on Rare Diseases and Orphan Products

Continue reading “Executive Summary – 9th European Conference on Rare Diseases and Orphan Products”

Find us on Bluesky

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ERN-RND @ern-rnd.bsky.social 4 hours

💻 Upcoming #webinar on “Recent Advances in Episodic Ataxias”
📅 18th November, 3:00 CET
🗣️ E. Indelicato and D. Pellerin, Medical University Innsbruck, Austria, and Miller School of Medicine, Miami, USA
Sign up 👉 https://t1p.de/6uunhttps://t1p.de/6uunpps://bsky.app/hashtag/webinar">#webinar and
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ERN-RND @ern-rnd.bsky.social 2 days

Today we were at the “100 Years of Metachromatic Leukodystrophy” #conference in Tübingen.
In our workshop on the MLD Patient Journey, we received great feedback from patient representatives, organizations, and clinicians—and several patient reps even want to join us in co-creating journeys for MLD.
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ERN-RND @ern-rnd.bsky.social 6 days

💻 Upcoming #webinar on “The importance of Genetic Counselling in the Diagnostic of Rare Neurological Disorders”
📅 9th December, 3:00 CET
🗣️ Maria Judit Molnar, Semmelweis University, Budapest, Hungary

Sign up 👉https://t1p.de/d825https://t1p.de/d825htps://bsky.app/hashtag/webinar">#webinar and
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ERN-RND @ern-rnd.bsky.social 6 days

💻 Upcoming #webinar on “Recent Advances in Episodic Ataxias”
📅 18th November, 3:00 CET
🗣️ E. Indelicato and D. Pellerin, Medical University Innsbruck, Austria, and Miller School of Medicine, Miami, USA
Sign up 👉 https://t1p.de/6uunhttps://t1p.de/6uunpps://bsky.app/hashtag/webinar">#webinar and
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ERN-RND @ern-rnd.bsky.social 2 weeks

Stay informed: Whether you’re a clinician, patient, carer, or patient representative, our ERN-RND #newsletter is your go-to source for the latest updates on Rare Neurological Diseases in Europe: www.ern-rnd.eu?mailpoet_rou...

#RareDisease #RareNeurologicalDisease #Neurology #RareNeurology
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ERN-RND @ern-rnd.bsky.social 2 weeks

💻 Upcoming #webinar on “Fluid Biomarkers in Frontotemporal Dementia”
📅 2nd December, 3:00 CET
🗣️ Domenico Plantone, AOU - University Hospital Siena, Italy

Sign up 👉https://t1p.de/9hsbhttps://t1p.de/9hsbctps://bsky.app/hashtag/webinar">#webinar and
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ERN-RND @ern-rnd.bsky.social 3 weeks

💻#webinar on “Guidelines on the Assessment and Treatment of Neurogenic Urinary and Sexual Symptoms”
📅25th November, 3 CET
🗣️A. Fanciulli and P. Guaraldi, Medical University Innsbruck and Azienda USL di Bologna
Sign up 👉 https://t1p.de/9chttps://t1p.de/9cxi7app/hashtag/webinar">#webinart with the and