News – Page 10 – ERN-RND | European Reference Network on Rare Neurological Diseases

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 3 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 3 days

Learn more about #RareNeurologicalDisease s in our monthly #newsletter:
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ERDERA @erdera.bsky.social 3 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 4 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 5 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

Category: News

Solve-RD project

MoU signed between ERN-RND & MDS-ES

@ERN_RND is on Twitter!

1st ERN-RND Winter School