News – Page 4 – ERN-RND | European Reference Network on Rare Neurological Diseases

Survey: educational needs in rare neurological diseases in Europe

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FUNDING – EJP RD / ERN Research Mobility Fellowship call open

Continue reading “FUNDING – EJP RD / ERN Research Mobility Fellowship call open”

EJP RD – ERN Research Mobility Fellowship funding opportunity

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ERICA project kick-off

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EJP RD Rare Disease Day Video

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Health Awareness Rare Disease Day 2021 campaign

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New leaflet for patients on Muscle tightness & stiffness – “spasticity” in ataxia

Continue reading “New leaflet for patients on Muscle tightness & stiffness – “spasticity” in ataxia”

ERN-RND recorded webinar: “Improving care for rare disease patients in Europe – Rare Disease Day 2021”

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“Der Weg zur europaweiten Zusammenarbeit” von Holm Graessner

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ERN-RND recorded webinar: “Rare Disease Natural History Studies: Experience from the GNAO1 Natural History study in a pre and postpandemic world”

Continue reading “ERN-RND recorded webinar: “Rare Disease Natural History Studies: Experience from the GNAO1 Natural History study in a pre and postpandemic world””

ERN-RND recorded webinar: “Progressive Supranuclear Palsy – Update on Diagnostics, Biomarkers and Therapies”

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Research article: “Novel instructionless eye tracking tasks identify emotion recognition deficits in frontotemporal dementia”

Continue reading “Research article: “Novel instructionless eye tracking tasks identify emotion recognition deficits in frontotemporal dementia” “

Case report: “Video Case Report: Action Myoclonus After CAR-T Cell Therapy”

Continue reading “Case report: “Video Case Report: Action Myoclonus After CAR-T Cell Therapy””

Rare Disease Day 2021 video

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New ERN-RND project manager

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New ERN-RND CPMS helpdesk

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Brief report: “Development of SARAhome, a New Video‐Based Tool for the Assessment of Ataxia at Home”

Continue reading “Brief report: “Development of SARAhome, a New Video‐Based Tool for the Assessment of Ataxia at Home””

ERN-RND February 2021 Newsletter

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EJP RD research training workshop – call open

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EURORDIS Leadership School – applications open

Continue reading “EURORDIS Leadership School – applications open”

Review article: “The European Reference Network for Rare Neurological Diseases”

Continue reading “Review article: “The European Reference Network for Rare Neurological Diseases””

Research article: “Lower urinary tract and bowel dysfunction in spinocerebellar ataxias”

Continue reading “Research article: “Lower urinary tract and bowel dysfunction in spinocerebellar ataxias””

Virtual Meeting on How to Improve Access to Care for Huntington Families – recording available

Continue reading “Virtual Meeting on How to Improve Access to Care for Huntington Families – recording available”

Review article: “Hypomyelinating leukodystrophies — unravelling myelin biology”

Continue reading “Review article: “Hypomyelinating leukodystrophies — unravelling myelin biology””

Research article: “Endocrine and Growth Abnormalities in 4H Leukodystrophy Caused by Variants in POLR3A, POLR3B, and POLR1C”

Continue reading “Research article: “Endocrine and Growth Abnormalities in 4H Leukodystrophy Caused by Variants in POLR3A, POLR3B, and POLR1C””

Registration and abstract submission for the EAN Congress 2021 are open

Continue reading “Registration and abstract submission for the EAN Congress 2021 are open”

Research article: “Apathy in presymptomatic genetic frontotemporal dementia predicts cognitive decline and is driven by structural brain changes”

Continue reading “Research article: “Apathy in presymptomatic genetic frontotemporal dementia predicts cognitive decline and is driven by structural brain changes””

No deal Brexit could have detrimental impact for four million people in UK living with a rare disease

Continue reading “No deal Brexit could have detrimental impact for four million people in UK living with a rare disease”

ERN-RND December 2020 Newsletter

Continue reading “ERN-RND December 2020 Newsletter”

EURORDIS Black Pearl Awards 2021 – Submit your photo

Continue reading “EURORDIS Black Pearl Awards 2021 – Submit your photo”

ePAG visit at Children’s Hospital Sant Joan de Déu, Barcelona
July 7, 2025
Having a rare disease means spending a lot of time around doctors and hospitals. Places, that even adults will not …read more »
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 »

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ERN-RND @ern-rnd.bsky.social 19 hours

#WorldBrainDay is coming up on July 22! "What would you change in the health care system for rare neurological diseases if you could change only one thing to make it better?" This is what we asked our network.

This is what our ERN-RND clinician Yury Seliverstov would change: youtu.be/fLyijvhkwpU
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ERN-RND @ern-rnd.bsky.social 2 days

Whether neurologist, patient, patient advocate or carer - if you are specialized in or affected by #RareNeurologicalDiseases and movement disorders, then you shouldn't miss our monthly newsletter with lots of news, disease knowledge, publications, webinars and events: tinyurl.com/383u46cz
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ERN-RND @ern-rnd.bsky.social 3 days

#WorldBrainDay in coming up on July 22 - how can we improve the health care system for rare neurological diseases? We asked our network what they would choose if they could chnge only one thing. This is what Iva Galovic from our partner org. #WorldBrainDay would choose:

www.youtube.com/watch?v=vAlr...
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ERN-RND @ern-rnd.bsky.social 6 days

July 22 is #WorldBrainDay - we asked our network what they would change in the healthcare system for RND if they could change only one thing in order to improve it.
This is what our ERN-RND clinician Kleopas Kleopa would focus on:
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ERN-RND @ern-rnd.bsky.social 1 week

#WorldBrainDayJuly22: If you could change 1 thing in the health care system for #RareNeurologicalDiseases to improve something, what would you choose and why?

This is what our ERN-RND member Mika Martikainen would prioritize:

youtu.be/WOqs5kEdNPw

#WorldBrainDay2025 #WorldBrainDay25 #BrainHealth
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ERN-RND @ern-rnd.bsky.social 1 week

#FriedreichAtaxia (FA) is progressive, meaning what you can do keeps changing. When you think you have gotten to understand FA, something new happens - says Brona Kearney, who has been living with FA for the past 23 years.
How does this disease affect a patient's life? This is Brona's story.
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ERN EuroBloodNet @erneurobloodnet.bsky.social 2 weeks

💻Don't miss the ERN-EuroBloodNet #ThursdayWebinar session on "Gene therapy for Pyruvate Kinase Deficiency and Congenital Dyserythropoietic Anemia Type II”!

🗓️3rd July - 17:00h CEST.
👉Registrations: eurobloodnet.eu/education/th...

#ERNeu #ERNs #HealthUnion #EU4Health #ShareCareCure #hematology