News 2020 – Page 3 – ERN-RND | European Reference Network on Rare Neurological Diseases

Research article: “Disease Progression and Prognostic Factors in Multiple System Atrophy: A Prospective Cohort Study”

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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

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NEW! ERN-RND introduction video

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EJP RD Networking Support Scheme (NSS) open

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ERN-RND at ECRD 2020 – summary

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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”

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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””

May is Huntington’s Disease Awareness Month

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ERN-RND May 2020 Newsletter

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Research article: “Cerebrospinal Fluid YKL-40 and Chitotriosidase Levels in Frontotemporal Dementia Vary by Clinical, Genetic and Pathological Subtype”

Continue reading “Research article: “Cerebrospinal Fluid YKL-40 and Chitotriosidase Levels in Frontotemporal Dementia Vary by Clinical, Genetic and Pathological Subtype””

Research article: “Teaching Video NeuroImages: Palatal tremor associated with SPG7 variants”

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ERN Newsletter – April 2020

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Rare Barometer survey on rare disease patients’ experience of COVID-19

Continue reading “Rare Barometer survey on rare disease patients’ experience of COVID-19”

Research article: “Longitudinal dynamics of mutant huntingtin and neurofilament light in Huntington’s disease: the prospective HD-CSF study”

Continue reading “Research article: “Longitudinal dynamics of mutant huntingtin and neurofilament light in Huntington’s disease: the prospective HD-CSF study””

Research article: “Driving Performance in Patients With Idiopathic Cervical Dystonia; A Driving Simulator Pilot Study”

Continue reading “Research article: “Driving Performance in Patients With Idiopathic Cervical Dystonia; A Driving Simulator Pilot Study””

EAN Movement Disorders Scientific Panel recommendations for COVID-19 pandemic

Continue reading “EAN Movement Disorders Scientific Panel recommendations for COVID-19 pandemic”

Dystonia, patient advocacy and the future by Monika Benson

Continue reading “Dystonia, patient advocacy and the future by Monika Benson”

Recording of webinar on Huntington’s disease & COVID-19 available

Continue reading “Recording of webinar on Huntington’s disease & COVID-19 available”

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

Continue reading “Solve-RD brokerage call open”

COVID-19: EURORDIS urges immediate action and proposes concrete solutions for rare disease patients

Continue reading “COVID-19: EURORDIS urges immediate action and proposes concrete solutions for rare disease patients”

Webinar on 6 April: “Huntington’s Disease & COVID-19 pandemic – a difficult combination”

Continue reading “Webinar on 6 April: “Huntington’s Disease & COVID-19 pandemic – a difficult combination””

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

Continue reading “EAN Congress 2020 moves online”

ECRD 2020 moves online

Continue reading “ECRD 2020 moves online”

EFNA launches survey on stigma & neurological conditions

Continue reading “EFNA launches survey on stigma & neurological conditions”

It’s #BrainAwarenessWeek 2020

Continue reading “It’s #BrainAwarenessWeek 2020”

European Reference Networks are 3 years old

Continue reading “European Reference Networks are 3 years old”

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 4 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 4 days

Learn more about #RareNeurologicalDisease s in our monthly #newsletter:
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ERDERA @erdera.bsky.social 4 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 5 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 6 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