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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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    • … for rare neurological diseases
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Author: ERN-RND

29 February 2020 | Süddeutscher Fachtag der Seltenen Erkrankungen

29 February 2020 | Süddeutscher Fachtag der Seltenen Erkrankungen

Continue reading “29 February 2020 | Süddeutscher Fachtag der Seltenen Erkrankungen”

Posted on February 29, 2020June 5, 2024Categories Past Events, Past Events 2020

28 February 2020 | Tag der Seltenen Erkrankungen in Mainz

28 February 2020 | Tag der Seltenen Erkrankungen in Mainz

Continue reading “28 February 2020 | Tag der Seltenen Erkrankungen in Mainz”

Posted on February 28, 2020June 5, 2024Categories Past Events, Past Events 2020

ERN-RND Survey: “Research Priorities” for patients

ERN-RND Survey: “Research Priorities” for patients

Continue reading “ERN-RND Survey: “Research Priorities” for patients”

Posted on February 26, 2020August 13, 2024Categories News 2020

22 February 2020 | Rare diseases and European Reference Networks

22 February 2020 | Rare diseases and European Reference Networks

Continue reading “22 February 2020 | Rare diseases and European Reference Networks”

Posted on February 22, 2020June 5, 2024Categories Past Events, Past Events 2020

20 February 2020: EURO-NMD webinar “mitochondrial donation”

20 February 2020: EURO-NMD webinar “mitochondrial donation”

Continue reading “20 February 2020: EURO-NMD webinar “mitochondrial donation””

Posted on February 20, 2020June 5, 2024Categories Past Events, Past Events 2020

18 February 2020 | ERN-RND webinar “mitochondrial disorder with chorea”

18 February 2020 | ERN-RND webinar “mitochondrial disorder with chorea”

Continue reading “18 February 2020 | ERN-RND webinar “mitochondrial disorder with chorea””

Posted on February 18, 2020June 5, 2024Categories Past Events, Past Events 2020

EJP RD calls for funding – ERNs only

EJP RD calls for funding – ERNs only

Continue reading “EJP RD calls for funding – ERNs only”

Posted on February 5, 2020August 13, 2024Categories News 2020

30 January 2020 | ERN-RND ePAG meeting

30 January 2020 | ERN-RND ePAG meeting
Posted on January 30, 2020June 5, 2024Categories Past Events, Past Events 2020

28 January 2020 | ERN-RND webinar “introduction to leukodystrophies”

28 January 2020 | ERN-RND webinar “introduction to leukodystrophies”

Continue reading “28 January 2020 | ERN-RND webinar “introduction to leukodystrophies””

Posted on January 28, 2020June 5, 2024Categories Past Events, Past Events 2020

21 January 2020 | ERN-RND webinar “immune-mediated choreas”

21 January 2020 | ERN-RND webinar “immune-mediated choreas”

Continue reading “21 January 2020 | ERN-RND webinar “immune-mediated choreas””

Posted on January 21, 2020June 5, 2024Categories Past Events, Past Events 2020

Successful ERN-RND Registry Application!

Successful ERN-RND Registry Application!

Continue reading “Successful ERN-RND Registry Application!”

Posted on January 20, 2020August 13, 2024Categories News 2020

14 January 2020 | ERN-RND webinar “inherited ataxias”

14 January 2020 | ERN-RND webinar “inherited ataxias”

Continue reading “14 January 2020 | ERN-RND webinar “inherited ataxias””

Posted on January 14, 2020June 5, 2024Categories Past Events, Past Events 2020

New #RareDiseaseDay 2020 poster available!

New #RareDiseaseDay 2020 poster available!

Continue reading “New #RareDiseaseDay 2020 poster available!”

Posted on January 8, 2020August 13, 2024Categories News 2020

ERN-RND welcomes new affiliated partners

ERN-RND welcomes new affiliated partners

Continue reading “ERN-RND welcomes new affiliated partners”

Posted on December 18, 2019August 13, 2024Categories News 2019

17 December | ERN-RND webinar “non-progressive congenital ataxia”

17 December | ERN-RND webinar “non-progressive congenital ataxia”

Continue reading “17 December | ERN-RND webinar “non-progressive congenital ataxia””

Posted on December 17, 2019June 5, 2024Categories Past Events, Past Events 2019

New EJP RD call: Networking Support Scheme is open!

New EJP RD call: Networking Support Scheme is open!

Continue reading “New EJP RD call: Networking Support Scheme is open!”

Posted on December 17, 2019August 13, 2024Categories News 2019

16 December | Solve-RD webinar “RD-Connect GPAP – advanced platform features”

16 December | Solve-RD webinar “RD-Connect GPAP – advanced platform features”

Continue reading “16 December | Solve-RD webinar “RD-Connect GPAP – advanced platform features””

Posted on December 16, 2019June 5, 2024Categories Past Events, Past Events 2019

9 December | Solve-RD webinar “RD-Connect GPAP – basic analysis”

9 December | Solve-RD webinar “RD-Connect GPAP – basic analysis”

Continue reading “9 December | Solve-RD webinar “RD-Connect GPAP – basic analysis””

Posted on December 9, 2019June 5, 2024Categories Past Events, Past Events 2019

6 December | Journée Nationale Maladie de Huntington

6 December | Journée Nationale Maladie de Huntington

Continue reading “6 December | Journée Nationale Maladie de Huntington”

Posted on December 6, 2019June 5, 2024Categories Past Events, Past Events 2019

“ERNs in a crucial phase of enlargement”

“ERNs in a crucial phase of enlargement”

Continue reading ““ERNs in a crucial phase of enlargement””

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

ERN Newsletter is out!

ERN Newsletter is out!

Continue reading “ERN Newsletter is out!”

Posted on December 5, 2019August 13, 2024Categories News 2019

Euro-ataxia publishes patient charter

Euro-ataxia publishes patient charter

Continue reading “Euro-ataxia publishes patient charter”

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

3 December | ERN-RND webinar “Neuroacanthocytosis syndromes, a rare chorea”

3 December | ERN-RND webinar “Neuroacanthocytosis syndromes, a rare chorea”

Continue reading “3 December | ERN-RND webinar “Neuroacanthocytosis syndromes, a rare chorea””

Posted on December 3, 2019June 5, 2024Categories Past Events, Past Events 2019

27-29 November | Annual Meeting DASNE

27-29 November | Annual Meeting DASNE

Continue reading “27-29 November | Annual Meeting DASNE”

Posted on November 29, 2019September 6, 2024Categories Past Events, Past Events 2019

EAN 2020 abstract submission is open!

EAN 2020 abstract submission is open!

Continue reading “EAN 2020 abstract submission is open!”

Posted on November 29, 2019August 13, 2024Categories News 2019

26 November | 5th BRAIN-TEAM patient organisations day

26 November | 5th BRAIN-TEAM patient organisations day

Continue reading “26 November | 5th BRAIN-TEAM patient organisations day”

Posted on November 26, 2019June 5, 2024Categories Past Events, Past Events 2019

#BrainLifeGoals photo competition, submit a photograph!

#BrainLifeGoals photo competition, submit a photograph!

Continue reading “#BrainLifeGoals photo competition, submit a photograph!”

Posted on November 22, 2019August 13, 2024Categories News 2019

European Conference on Rare Diseases & Orphan Products 2020, submit your poster abstract!

European Conference on Rare Diseases & Orphan Products 2020, submit your poster abstract!

Continue reading “European Conference on Rare Diseases & Orphan Products 2020, submit your poster abstract!”

Posted on November 22, 2019August 13, 2024Categories News 2019

100 days to go until Rare Disease Day 2020!

100 days to go until Rare Disease Day 2020!

Continue reading “100 days to go until Rare Disease Day 2020!”

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

SCA Global Conference registration + poster abstract submissions open!

SCA Global Conference registration + poster abstract submissions open!

Continue reading “SCA Global Conference registration + poster abstract submissions open!”

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

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Webinar Schedule

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ERN-RND

@ern-rnd.bsky.social

157 Followers 88 Following 162 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 3 hours

    10 minutes with the Danish Queen - our ePAG John Gerbild talked to the Queen about how life is like with a rare diagnosis at the Nordic Rare Disease Summit in Copenhagen.
  • Get to this post

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

    Our ePAGs Monika Benson and John Gerbild are attending this year's Nordic Rare Disease Summit in Copenhagen. One of the highlights is the "Patient Empowerment Gap", the largest Nordic rare disease patient empowerment survey ever conducted: nordicrarediseasesummit.org/the-patient-...
  • Get to this post

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

    Interested in fetal surgery? Then join our Scientific Symposium "European Healthcare for RND Patients" on October 28! Jan Deprest from the ERN ERNICA will talk about "Fetal surgery as an ERN example" at 8:20 CET.

    Registration (free of charge): tinyurl.com/p8wrbucf
    Program: tinyurl.com/4zbdvuty
  • Get to this post

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

    💻U#webinar#webinar on “Patient Journeys: Reliable Comprehensive Documents which Summarise a Rare Disease”
    📅23rd September, 3 CEST
    🗣️P. Mihaylova & M. Kearney, Tallaght University Hospital
    Sighttps://t1p.de/3r6k3de/3r6k3
    Joint w/ the European Reference Network for Rare Neuromuscular Diseases and
  • Get to this post

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

    💻U#webinar#webinar on “Neurological and Non-Neurological Aspects in Palliative Care of FTD and PPA Patients”
    📅16th September, 3:00 CEST
    🗣️Renate Wahl, University Hospital Aachen, Germany
    Sighttps://t1p.de/j8mlcde/j8mlc
    Joint w/ the European Reference Network for Rare Neuromuscular Diseases and
  • Get to this post

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

    "But why can't you sit with your body twisted and the head facing on the computer?" This is what our ePAG Monika Benson, who is affected by #CervicalDystonia, got to hear from a health insurrance officer when trying to explain her condition years ago.

    youtu.be/1A2W4tfH39w
  • Get to this post

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

    💻U#webinar#webinar on “Neurological and Non-Neurological Aspects in Palliative Care of FTD and PPA Patients”
    📅16th September, 3:00 CEST
    🗣️Renate Wahl, University Hospital Aachen, Germany
    Sighttps://t1p.de/j8mlcde/j8mlc
    Joint w/ the European Reference Network for Rare Neuromuscular Diseases and

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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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