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ERN-RND | European Reference Network on Rare Neurological Diseases

ERN-RND | European Reference Network on Rare Neurological Diseases

for rare or low prevalence complex diseases

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Category: News 2019

Dystonia Europe survey – please participate

Dystonia Europe survey – please participate

Continue reading “Dystonia Europe survey – please participate”

Posted on May 20, 2019August 13, 2024Categories News 2019

EAN interviews ERN-RND coordinator Holm Graessner

EAN interviews ERN-RND coordinator Holm Graessner

Continue reading “EAN interviews ERN-RND coordinator Holm Graessner”

Posted on May 6, 2019August 13, 2024Categories News 2019

#BrainLifeGoals project grants from EFNA

#BrainLifeGoals project grants from EFNA

Continue reading “#BrainLifeGoals project grants from EFNA”

Posted on May 2, 2019August 13, 2024Categories News 2019

Brain, Mind and Pain #BookofEvidence for 2019-2024 EU mandate released

Brain, Mind and Pain #BookofEvidence for 2019-2024 EU mandate released

Continue reading “Brain, Mind and Pain #BookofEvidence for 2019-2024 EU mandate released”

Posted on May 2, 2019August 13, 2024Categories News 2019

Report – First SCA Global Conference

Report – First SCA Global Conference

Continue reading “Report – First SCA Global Conference”

Posted on April 15, 2019August 13, 2024Categories News 2019

MoU signed between ERN-RND & EAN

MoU signed between ERN-RND & EAN

Continue reading “MoU signed between ERN-RND & EAN”

Posted on April 11, 2019August 13, 2024Categories News 2019

The ERNs are getting ready for the challenges of enlarging the ERNs

The ERNs are getting ready for the challenges of enlarging the ERNs

Continue reading “The ERNs are getting ready for the challenges of enlarging the ERNs”

Posted on April 8, 2019August 13, 2024Categories News 2019

Call for Proposals – Grant Opportunity for BPAN and MPAN research

Call for Proposals – Grant Opportunity for BPAN and MPAN research

Continue reading “Call for Proposals – Grant Opportunity for BPAN and MPAN research”

Posted on March 21, 2019August 13, 2024Categories News 2019

18 February 2019 | Trial readiness and registries in RND workshop report

18 February 2019 | Trial readiness and registries in RND workshop report

Continue reading “18 February 2019 | Trial readiness and registries in RND workshop report”

Posted on March 15, 2019August 13, 2024Categories News 2019

Rare Disease Day: a new EU platform to support better diagnosis and treatment

Rare Disease Day: a new EU platform to support better diagnosis and treatment

Continue reading “Rare Disease Day: a new EU platform to support better diagnosis and treatment”

Posted on March 7, 2019August 13, 2024Categories News 2019

The ERNs are building a common training and eLearning strategy

The ERNs are building a common training and eLearning strategy

Continue reading “The ERNs are building a common training and eLearning strategy”

Posted on March 4, 2019August 13, 2024Categories News 2019

ERN-RND, ZSE and Solve-RD coordinating offices on #RareDiseaseDay

ERN-RND, ZSE and Solve-RD coordinating offices on #RareDiseaseDay

Continue reading “ERN-RND, ZSE and Solve-RD coordinating offices on #RareDiseaseDay”

Posted on February 28, 2019August 13, 2024Categories News 2019

Living with ataxia and advocating around the world #RareDiseaseDay

Living with ataxia and advocating around the world #RareDiseaseDay

Continue reading “Living with ataxia and advocating around the world #RareDiseaseDay”

Posted on February 28, 2019August 13, 2024Categories News 2019

Working in the BRAIN-TEAM: raising awareness of rare diseases daily #RareDiseaseDay

Continue reading “Working in the BRAIN-TEAM: raising awareness of rare diseases daily #RareDiseaseDay”

Posted on February 27, 2019November 3, 2024Categories News 2019

Being diagnosed at the centre of rare diseases in Tübingen (ZSE) #RareDiseaseDay

Being diagnosed at the centre of rare diseases in Tübingen (ZSE) #RareDiseaseDay

Continue reading “Being diagnosed at the centre of rare diseases in Tübingen (ZSE) #RareDiseaseDay”

Posted on February 26, 2019August 13, 2024Categories News 2019

Pediatric ataxias – the daily work of a clinician in Italy #RareDiseaseDay

Pediatric ataxias – the daily work of a clinician in Italy #RareDiseaseDay

Continue reading “Pediatric ataxias – the daily work of a clinician in Italy #RareDiseaseDay”

Posted on February 20, 2019August 13, 2024Categories News 2019

ERN-RND member Pr Boespflug-Tanguy & team find new Leukodystrophies gene and potential treatment

ERN-RND member Pr Boespflug-Tanguy & team find new Leukodystrophies gene and potential treatment

Continue reading “ERN-RND member Pr Boespflug-Tanguy & team find new Leukodystrophies gene and potential treatment”

Posted on February 12, 2019August 13, 2024Categories News 2019

ERN-RND short fellowship experience in Tübingen, Germany

ERN-RND short fellowship experience in Tübingen, Germany

Continue reading “ERN-RND short fellowship experience in Tübingen, Germany”

Posted on February 11, 2019August 13, 2024Categories News 2019

Full report – 4th European Reference Networks Conference

Full report – 4th European Reference Networks Conference

Continue reading “Full report – 4th European Reference Networks Conference”

Posted on January 8, 2019August 13, 2024Categories News 2019

Posts pagination

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Webinar Schedule

Latest News

  • 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

153 Followers 86 Following 142 Posts

European Reference Network for Rare Neurological Diseases (ERN-RND) to improve diagnosis, care & treatment of RND patients.
Free webinars: https://www.ern-rnd.eu/education-training/online-medical-education-for-rare-neurological-diseases/

  • Get to this post

    European Paediatric Neurology Society (EPNS) @epnsnews.bsky.social 2 weeks

    Want to be actively involved in the activities of the YEPNS?

    Learn more - epns.info/young-epns-y...

    Join for FREE! - epns.info/young-epns-y...
  • Get to this post

    ERDERA @erdera.bsky.social 2 weeks

    📢 Exciting news — the #ERDERA Networking Support Scheme is n#ERDERA for applications! 👉 If you are working to advance research in #RareDiseases or rare cancers, this co#RareDiseasesnding opportunity you're looking for!
    🔗 Find out more: https://loom.ly/CwIvcvM
    🔁 Repost: Help us spread this info!
  • Get to this post

    ERN-RND @ern-rnd.bsky.social 2 weeks

    Join our Scientific Symposium on "European Healthcare for RND Patients" on October 28 online! Free registration: us02web.zoom.us/webinar/regi...

    Find the programme here: www.ern-rnd.eu/wp-content/u...

    #HealthcareEU #Neurology #RareDisease #RareNeurologicalDisease #Symposium
  • Get to this post

    ERN-RND @ern-rnd.bsky.social 3 weeks

    Movement Disorders affect also children and therefore paediatric scales are needed - but which one to use when, what treatment in which frequency? A standardization is needed. Learn more in our interview with ERN-RND clinician Juan Dario Ortigoza Escobar www.youtube.com/watch?v=k46u...
  • Get to this post

    European Paediatric Neurology Society (EPNS) @epnsnews.bsky.social 3 weeks

    We are delighted to announce that the application period for EPNS Visiting Teacher 2026 is now open!

    For more information visit: epns.info/epns-visitin...
  • Get to this post

    ERN-RND @ern-rnd.bsky.social 4 weeks

    #WorldBrainDay - There are many gaps in the European #Healthcare systems for rare neurological diseases - but if you could change only #OneThing to make it better, what would you choose? Find out what our clinicians, patient advocates and patient organizations would do!
  • Get to this post

    ERN-RND @ern-rnd.bsky.social 4 weeks

    One more day till #WorldBrainDay: "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 ERN-RND clinician Rebecca Schuele would change: https://f.mtr.cool/mqrhizkhjs

    #WorldBrainDay2025 <https://f.mtr.cool/mqrhizkhjstag/BrainHealth">#BrainHealth

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ERN-RND European Reference Network for Rare Neurological Diseases

Our mission

ERN-RND aims to support rare neurological patients in Europe in getting a timely and appropriate diagnosis, treatment and care.

ERNs

ERN-RND is one of the 24 European Reference Networks (ERNs) approved by the ERN Board of Member States. For more information about the ERNs and the EU Health strategy, please visit https://ec.europa.eu/health/ern_en

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