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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

Postdoc in Computational Genomics at the University Hospital Tübingen – Applications open!

Postdoc in Computational Genomics at the University Hospital Tübingen – Applications open!

Continue reading “Postdoc in Computational Genomics at the University Hospital Tübingen – Applications open!”

Posted on April 29, 2019October 2, 2025Categories 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

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Webinar Schedule

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ERN-RND

@ern-rnd.bsky.social

176 Followers 90 Following 225 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

    ERN-RND @ern-rnd.bsky.social 6 days

    💻 Upcoming #webinar on “Palliative care for leukodystrophies and other rare neurological diseases (pediatric focus)”
    📅 17th March, 3:00 CET
    🗣️ Nicole Wolf,  Amsterdam University Medical Centers, Netherlands
    Sign up 👉https://t1p.de/xotthttps://t1p.de/xottwtps://bsky.app/hashtag/webinar">#webinar and
  • Get to this post

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

    Myoclonus Dystonia often begins in childhood, yet it’s frequently mistaken for more common conditions like cerebral palsy. This misdiagnosis can delay accurate answers and effective care for years.
    Learn more about the condition in our video interview with Belén Dueñas Pérez. youtu.be/HgpHRkNAwaQ
  • Get to this post

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

    💻 Upcoming #webinar on “Getting the Most Out of Physiotherapy in Dystonia”
    📅 3rd March, 3:00 CET
    🗣️Maarten Nijkrake, Radboud University Medical Center, Nijmegen, The Netherlands
    Sign up 👉 https://t1p.de/ll1py

    Joint with the and

    #Physiotherapy #Dystoni#Physiotherapynhttps://t1p.de/ll1pyg/Dystonia">#Dystonian#RareDisease
  • Get to this post

    ERN-RND @ern-rnd.bsky.social 1 month

    POSTPONED 💻 Upcoming #webinar on “Social and Lifestyle Issues Related to Ataxias and HSP”
    📅 13th January, NEW DATE: tba
    🗣️ Lotte van de Venis, Radboud University Medical Center, Nijmegen and Lori Renna Linton, Euro-HSP

    Sign up 👉https://t1p.de/5nefhttps://t1p.de/5nef2a href="https://bsky.app/hashtag/webinar">#webinar
    ❤️ 2
  • Get to this post

    ERN-RND @ern-rnd.bsky.social 1 month

    POSTPONED 💻 Upcoming #webinar on “Social and Lifestyle Issues Related to Ataxias and HSP”
    📅 13th January, NEW DATE: tba
    🗣️ Lotte van de Venis, Radboud University Medical Center, Nijmegen and Lori Renna Linton, Euro-HSP

    Sign up 👉https://t1p.de/5nefhttps://t1p.de/5nef2a href="https://bsky.app/hashtag/webinar">#webinar
    ❤️ 3 🔄 1
  • Get to this post

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

    POSTPONED 💻 Upcoming #webinar on “Social and Lifestyle Issues Related to Ataxias and HSP”
    📅 13th January, NEW DATE: tba
    🗣️ Lotte van de Venis, Radboud University Medical Center, Nijmegen and Lori Renna Linton, Euro-HSP

    Sign up 👉https://t1p.de/5nefhttps://t1p.de/5nef2a href="https://bsky.app/hashtag/webinar">#webinar
    ❤️ 1
  • Get to this post

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

    POSTPONED 💻 Upcoming #webinar on “Social and Lifestyle Issues Related to Ataxias and HSP”
    📅 13th January, NEW DATE: tba
    🗣️ Lotte van de Venis, Radboud University Medical Center, Nijmegen and Lori Renna Linton, Euro-HSP

    Sign up 👉https://t1p.de/5nefhttps://t1p.de/5nef2a href="https://bsky.app/hashtag/webinar">#webinar
    ❤️ 1

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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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