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

David Marsden Award 2021 – open call for submission

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New FTD website by FTD talk team

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SCA & ARCA Global Online Conference 2020 – Abstract submission

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

Webinars on Leukodystrophies by ELA Deutschland

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Results of EFNA’s survey on stigma & neurological disorder

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EURORDIS Winter School 2021

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Share4Rare – new international patient registry for COVID-19

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

2020 CEF Telecom call – eHealth open

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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

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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

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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”

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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

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NEW Euro-HSP Facebook page

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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”

ERN-RND at EAN congress on 22-26 May 2020

Continue reading “ERN-RND at EAN congress on 22-26 May 2020”

Livre: “Huntington…et alors? Comprendre la maladie et vivre avec”

Continue reading “Livre: “Huntington…et alors? Comprendre la maladie et vivre avec””

NEW! research article: “Management of rare movement disorders in Europe: outcome of surveys of ERN-RND”

Continue reading “NEW! research article: “Management of rare movement disorders in Europe: outcome of surveys of ERN-RND””

Meet us at EAN2025
June 11, 2025
Are you at this year’s EAN Congress in Helsinki? Then come and visit us at our booth (N21) in the …read more »
Review on DBS for Dystonia
June 11, 2025
Despite considerable achievements in genetics in dystonias, their response to possible treatment such as Deep Brain Stimulation (DBS) remains to …read more »
John Gerbild elected as Board Director for EURORDIS
May 19, 2025
We are happy to announce that our patient advocate John Gerbild (representative for: Ataxia/HSP) is now a newly elected Board …read more »

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ERKNet - European Reference Network for Rare Kidney Diseases @erknet.bsky.social 5 days

Upcoming ERKNet Webinar! 📢

📝Topic: Anti-Factor H Auto-Antibodies
🗓️ Date: June 24, 2025
⏰ Time: 4:00–5:00 PM CET
👩‍⚕️ Speaker: Michal Malina

👉 Register now: register.gotowebinar.com/register/711...

🌞ERKNet webinars will take a summer break after this session. We wish everyone a wonderful summertime!
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ERN-RND @ern-rnd.bsky.social 5 days

Learn more about #RareNeurologicalDisease s in our monthly #newsletter:
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ERDERA @erdera.bsky.social 5 days

Make your voice heard! 🗣️ #ERDERA has launched a survey to explore how #RareDisease patients can contribute to EU-funded research.
🔐 Confidential & 🤝 Co-created with patients
🔗 Take the survey: shorturl.at/ePVuL (open until mid-July)
📄 Learn more: shorturl.at/c03db
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ERN-RND @ern-rnd.bsky.social 6 days

#Study on #MonogenicDystonia: Despite considerable achievements in genetics in #dystonias, their response to possible treatment such as #DeepBrainStimulation (DBS) remains to be elucidated. ERN-RND is performing a systematic review on the efficacy of #DBS.
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JARDIN Joint Action @jardinjointaction.bsky.social 7 days

❓ Have you heard of the #ERNs?

🔎 Discover the 24 European Reference Networks and how they support people living with rare diseases or complex conditions across Europe.

🌍 Visit the JARDIN website to explore them all!

👉 jardin-ern.eu/european-ref...

#RareDiseases #PatientVoice #EU4Health
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ERN-RND @ern-rnd.bsky.social 4 weeks

HSP stands for Hereditary Spastic Paraplegia. What is this disease about and how will it affect the future life of a patient? Need a quick overview in easy to understand? Check out our patient journeys for HSP - in many different languages: https://f.mtr.cool/obibsrmjft
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ERN-RND @ern-rnd.bsky.social 4 weeks

💻 U#webinar#webinar on “Recent Advances in Clinical Trials in Multiple System Atrophy”
📅 20th May, 3:00 CEST
🗣️ David Bendetowicz, University Hospital Bordeaux, France
Sign https://t1p.de/ri7k3de/ri7k3
Joint with the European Reference Network for Rare Neuromuscular Diseases and