News 2019 – Page 2 – ERN-RND | European Reference Network on Rare Neurological Diseases

Dystonia Europe survey – please participate

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EAN interviews ERN-RND coordinator Holm Graessner

Continue reading “EAN interviews ERN-RND coordinator Holm Graessner”

#BrainLifeGoals project grants from EFNA

Continue reading “#BrainLifeGoals project grants from EFNA”

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

Continue reading “Brain, Mind and Pain #BookofEvidence for 2019-2024 EU mandate released”

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

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Report – First SCA Global Conference

Continue reading “Report – First SCA Global Conference”

MoU signed between ERN-RND & EAN

Continue reading “MoU signed between ERN-RND & EAN”

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

Continue reading “The ERNs are getting ready for the challenges of enlarging the ERNs”

Call for Proposals – Grant Opportunity for BPAN and MPAN research

Continue reading “Call for Proposals – Grant Opportunity for BPAN and MPAN research”

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

Continue reading “18 February 2019 | Trial readiness and registries in RND workshop report”

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

Continue reading “Rare Disease Day: a new EU platform to support better diagnosis and treatment”

The ERNs are building a common training and eLearning strategy

Continue reading “The ERNs are building a common training and eLearning strategy”

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

Continue reading “ERN-RND, ZSE and Solve-RD coordinating offices on #RareDiseaseDay”

Living with ataxia and advocating around the world #RareDiseaseDay

Continue reading “Living with ataxia and advocating around the world #RareDiseaseDay”

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

Continue reading “Working in the BRAIN-TEAM: raising awareness of rare diseases daily #RareDiseaseDay”

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

Continue reading “Being diagnosed at the centre of rare diseases in Tübingen (ZSE) #RareDiseaseDay”

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

Continue reading “Pediatric ataxias – the daily work of a clinician in Italy #RareDiseaseDay”

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

Continue reading “ERN-RND short fellowship experience in Tübingen, Germany”

Full report – 4th European Reference Networks Conference

Continue reading “Full report – 4th European Reference Networks Conference”

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...