ERN-RND – Page 9 – ERN-RND | European Reference Network on Rare Neurological Diseases

7-10 0ctober 2020 | 11th World Congress of Neurorehabilitation

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Research article: “Video-tutorial for the Movement Disorder Society criteria for progressive supranuclear palsy”

Continue reading “Research article: “Video-tutorial for the Movement Disorder Society criteria for progressive supranuclear palsy””

6 October 2020 | ERN-RND webinar “Treatment of spasticity in HSP and leukodystrophies”

Continue reading “6 October 2020 | ERN-RND webinar “Treatment of spasticity in HSP and leukodystrophies””

EJP RD open call for Research Mobility Fellowships

Continue reading “EJP RD open call for Research Mobility Fellowships”

Research article: “Cross-disease analysis of depression, ataxia and dystonia highlights a role for synaptic plasticity and the cerebellum in the pathophysiology of these comorbid diseases”

Continue reading “Research article: “Cross-disease analysis of depression, ataxia and dystonia highlights a role for synaptic plasticity and the cerebellum in the pathophysiology of these comorbid diseases””

Research article: “Metachromatic leukodystrophy genotypes in The Netherlands reveal novel pathogenic ARSA variants in non-Caucasian patients”

Continue reading “Research article: “Metachromatic leukodystrophy genotypes in The Netherlands reveal novel pathogenic ARSA variants in non-Caucasian patients””

September 2020 | Dystonia Awareness Month

Continue reading “September 2020 | Dystonia Awareness Month”

Research article: “Defining the clinical, molecular and imaging spectrum of adaptor protein complex 4-associated hereditary spastic paraplegia”

Continue reading “Research article: “Defining the clinical, molecular and imaging spectrum of adaptor protein complex 4-associated hereditary spastic paraplegia””

Research video: “Criss-cross gait A clue to glucose transporter type 1 deficiency syndrome”

Continue reading “Research video: “Criss-cross gait A clue to glucose transporter type 1 deficiency syndrome””

29 September 2020 | ERN-RND webinar “How can we develop and implement evidence based rehabilitation in rare disorders?”

Continue reading “29 September 2020 | ERN-RND webinar “How can we develop and implement evidence based rehabilitation in rare disorders?””

New ERN-RND registry coordinator

Continue reading “New ERN-RND registry coordinator”

25 September | International Ataxia Awareness Day (IAAW)

EJP RD open call for Selection of Topics for Research Training Workshops

Continue reading “EJP RD open call for Selection of Topics for Research Training Workshops”

17 September 2020 | EURO-NMD webinar “the basics of genetic approaches for NMDs – using DMD as a paradigm”

Continue reading “17 September 2020 | EURO-NMD webinar “the basics of genetic approaches for NMDs – using DMD as a paradigm””

12-16 September 2020 | MDS Virtual Congress

Continue reading “12-16 September 2020 | MDS Virtual Congress”

Research article: “Huntington’s disease alters human neurodevelopment”

Continue reading “Research article: “Huntington’s disease alters human neurodevelopment””

Research article: “Cardiac phenotype in ATP1A3-related syndromes: A multicentre cohort study”

Continue reading “Research article: “Cardiac phenotype in ATP1A3-related syndromes: A multicentre cohort study””

15 September 2020 | ERN-RND webinar “A challenge in neurogenetics: Huntington disease in kids”

Continue reading “15 September 2020 | ERN-RND webinar “A challenge in neurogenetics: Huntington disease in kids””

11 September 2020 | EHDN’s Bridging Event 2020

Continue reading “11 September 2020 | EHDN’s Bridging Event 2020”

Research article: “Dystonia genes functionally converge in specific neurons and share neurobiology with psychiatric disorders”

Continue reading “Research article: “Dystonia genes functionally converge in specific neurons and share neurobiology with psychiatric disorders””

10 September 2020 | ERN-RND webinar “How to assess and manage spastic gait in rare diseases?”

Continue reading “10 September 2020 | ERN-RND webinar “How to assess and manage spastic gait in rare diseases?””

European Spinocerebellar Ataxia Type 3/Machado-Joseph Disease Initiative (ESMI) –lay summary of the results of this 4-year Consortium study

Continue reading “European Spinocerebellar Ataxia Type 3/Machado-Joseph Disease Initiative (ESMI) –lay summary of the results of this 4-year Consortium study”

8 September 2020 | ERN-RND webinar “Semantic variant of primary progressive aphasia”

Continue reading “8 September 2020 | ERN-RND webinar “Semantic variant of primary progressive aphasia””

8 September 2020 | 4th EAN Task Force for Rare Neurological Diseases Teaching Course

Continue reading “8 September 2020 | 4th EAN Task Force for Rare Neurological Diseases Teaching Course”

ERN-RND September 2020 Newsletter

Continue reading “ERN-RND September 2020 Newsletter”

1 December 2020 | ERN-RND webinar “Functional movement disorders: a diagnostic guide”

Continue reading “1 December 2020 | ERN-RND webinar “Functional movement disorders: a diagnostic guide””

Research article: “Conversion of individuals at risk for spinocerebellar ataxia types 1, 2, 3, and 6 to manifest ataxia (RISCA): a longitudinal cohort study”

Continue reading “Research article: “Conversion of individuals at risk for spinocerebellar ataxia types 1, 2, 3, and 6 to manifest ataxia (RISCA): a longitudinal cohort study””

NEW ePAG patient advocate for Huntington’s disease from Bulgaria

Continue reading “NEW ePAG patient advocate for Huntington’s disease from Bulgaria”

Solve-RD Rare Disease Models & Mechanisms Network (RDMM-Europe)

Continue reading “Solve-RD Rare Disease Models & Mechanisms Network (RDMM-Europe)”

Jump for Dystonia competition in September

Continue reading “Jump for Dystonia competition in September”

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 21 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