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

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

Continue reading “Guidelines on EU Emergency Assistance in Cross-border Cooperation in Healthcare”

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

Continue reading “European Commission launches COVID-19 Clinical Management Support System”

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

Continue reading “European Reference Networks are 3 years old”

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

Continue reading “EJP RD calls for funding – ERNs only”

Successful ERN-RND Registry Application!

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New #RareDiseaseDay 2020 poster available!

Continue reading “New #RareDiseaseDay 2020 poster available!”

ERN-RND welcomes new affiliated partners

Continue reading “ERN-RND welcomes new affiliated partners”

New EJP RD call: Networking Support Scheme is open!

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“ERNs in a crucial phase of enlargement”

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ERN Newsletter is out!

Continue reading “ERN Newsletter is out!”

Euro-ataxia publishes patient charter

Continue reading “Euro-ataxia publishes patient charter”

EAN 2020 abstract submission is open!

Continue reading “EAN 2020 abstract submission is open!”

#BrainLifeGoals photo competition, submit a photograph!

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European Conference on Rare Diseases & Orphan Products 2020, submit your poster abstract!

Continue reading “European Conference on Rare Diseases & Orphan Products 2020, submit your poster abstract!”

100 days to go until Rare Disease Day 2020!

Continue reading “100 days to go until Rare Disease Day 2020!”

SCA Global Conference registration + poster abstract submissions open!

Continue reading “SCA Global Conference registration + poster abstract submissions open!”

MEP Meeting on Brain Health and Neurological Conditions
February 19, 2025
“Does current policy meet the needs of the rare neurology community” and “The impact of rare neurological conditions, through the …read more »
Solve-RD: Interview with coordinator Holm Graessner
February 12, 2025
Within the Solve-RD project, over 300 experts from different European countries and Canada re-analysed genome data from undiagnosed 6447 patients. …read more »
Holm Graessner becomes Lancet Commissioner
February 4, 2025
Our coordinator Holm Graessner is now commissioner for the freshly launched Rare Diseases International Lancet Commission on Rare Diseases (RDI-LCRD)! …read more »

Find us on Bluesky

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ERN-RND @ern-rnd.bsky.social 20 hours

💻 U#webinar#webinar on “Neurogeriatric Aspects of Huntington’s Disease and Chorea”
📅 18th March, 3:00 CEST
🗣️ Jean-Marc Burgunder

Sign https://t1p.de/1lk3hde/1lk3h
Joint with the European Reference Network for Rare Neuromuscular Diseases and the
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ERN-RND @ern-rnd.bsky.social 23 hours

Interested in “Leriglitazone Trial in Adrenoleukodystrophy”? Don’t miss our free #WinterSchool session on March 12th with Caroline Sevin and Fanny Mochel, in partnership with EPNS - European Paediatric Neurology Society.

Register now: https://t1p.de/eajix
Programme: https://t1p.de/jrxm9
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ERN-RND @ern-rnd.bsky.social 4 days

Join us on March 12th for our free #WinterSchool session with Marlen Lauffer, focusing on “Treatment of Nano-rare Neurological Diseases”, in collaboration with EPNS - European Paediatric Neurology Society.
Register now: https://t1p.de/eajix
Programme: https://t1p.de/jrxm9

<https://t1p.de/eajix.app/hashtaghttps://t1p.de/jrxm9anoraredisease
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ERN-RND @ern-rnd.bsky.social 4 days

#RareDiseaseDay - what is this about? Take a look! httpshttps://youtu.be/WVDa1BD0K94areDiseaseDay2025Day">#RareDiseaseDaya1BD0K94

#RareDiseaseDay2025
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ERN-RND @ern-rnd.bsky.social 4 days

#RareDiseaseDay - what is this about? Take a look! httpshttps://youtu.be/WVDa1BD0K94areDiseaseDay2025Day">#RareDiseaseDaya1BD0K94

#RareDiseaseDay2025