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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

Members Area
  • Home
  • About us
    • What is an ERN
    • Cross border healthcare
    • What is ERN-RND
    • Objectives of ERN-RND
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    • Publications Acknowledging ERN-RND
  • Expert Centres
    • … for rare neurological diseases
    • Full members and affiliated partners
    • How to contact expert centres
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    • Map of expert centers
    • Overview ERNs
  • Online case discussion with CPMS
    • What is the CPMS
    • Who can use it
    • How to use it
    • MLD Treatment eligibility panel
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    • Multidisciplinary Board for DBS in Dystonia
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  • Disease Knowledge
    • Cerebellar Ataxia & Hereditary Spastic Paraplegias (HSPs)
    • Chorea & Huntington’s disease
    • Dystonias, NBIA and Paroxysmal Disorders
    • Frontotemporal dementia
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    • Atypical Parkinsonism: MSA, PSP & Genetic Parkinson’s Disease
    • ERN-RND Patient Journeys
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    • ERN-RND registry objectives
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      • Data Analysis 2023
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  • Collab­ora­tions
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      • EJP RD
        • EJP RD in a nutshell
        • What is EJP RD?
        • EJP RD mission & goals
        • EJP RD & ERNs
      • Solve-RD
        • What is Solve-RD?
        • Main Objectives
        • Implementation Steps
        • Analysis
      • Value of Treatment (VoT) project
        • VoT project coordinator
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Category: Past Events

29 September- 1 October 2022 | ERN-RND Annual Meeting

29 September- 1 October 2022 | ERN-RND Annual Meeting
Event: ERN-RND Annual Meeting 2022

Venue: Crona Kliniken, room HS 210, Hoppe-Seyler-Str. 3 · 72076 Tübingen and online

Members of ERN-RND meet once a year to discuss the latest network/disease specific/research updates.

Full programme here.

Posted on October 1, 2022June 5, 2024Categories Past Events, Past Events 2022

Online Scientific Symposium

Online Scientific Symposium
Continue reading “Online Scientific Symposium”
Posted on September 29, 2022June 5, 2024Categories Past Events, Past Events 2022

3 – 7 July 2022 | ISPRM/ESPRM/SPMFR

3 – 7 July 2022 | ISPRM/ESPRM/SPMFR

Continue reading “3 – 7 July 2022 | ISPRM/ESPRM/SPMFR”

Posted on July 8, 2022June 5, 2024Categories Past Events, Past Events 2022

27 June – 1 July 2022 | 11th European Conference on Rare Diseases & Orphan Products

27 June – 1 July 2022 | 11th European Conference on Rare Diseases & Orphan Products

Continue reading “27 June – 1 July 2022 | 11th European Conference on Rare Diseases & Orphan Products”

Posted on July 2, 2022June 5, 2024Categories Past Events, Past Events 2022

25 – 28 June 2022 | 8th Congress of the European Academy of Neurology – Europe 2022

25 – 28 June 2022 | 8th Congress of the European Academy of Neurology – Europe 2022

Continue reading “25 – 28 June 2022 | 8th Congress of the European Academy of Neurology – Europe 2022”

Posted on June 29, 2022June 5, 2024Categories Past Events, Past Events 2022

21 – 26 May 2022 | 15th World Congress of Neuromodulation (INS 2022)

21 – 26 May 2022 | 15th World Congress of Neuromodulation (INS 2022)

Continue reading “21 – 26 May 2022 | 15th World Congress of Neuromodulation (INS 2022)”

Posted on May 26, 2022June 5, 2024Categories Past Events, Past Events 2022

18 – 21 May| 34th European Academy Of Childhood Disability (EACD) Annual Meeting

18 – 21 May| 34th European Academy Of Childhood Disability (EACD) Annual Meeting

Continue reading “18 – 21 May| 34th European Academy Of Childhood Disability (EACD) Annual Meeting”

Posted on May 22, 2022June 5, 2024Categories Past Events, Past Events 2022

28 April-2 May 2022 | 14th European Paediatric Neurology Society Congress

28 April-2 May 2022 | 14th European Paediatric Neurology Society Congress

Continue reading “28 April-2 May 2022 | 14th European Paediatric Neurology Society Congress”

Posted on May 2, 2022June 5, 2024Categories Past Events, Past Events 2022

25 – 27 April 2022 | Solve-RD Annual Meeting

25 – 27 April 2022 | Solve-RD Annual Meeting

Venue: Prague, CZ

Continue reading “25 – 27 April 2022 | Solve-RD Annual Meeting”
Posted on April 27, 2022June 5, 2024Categories Past Events, Past Events 2022

24 – 27 March 2022 | 16th World Congress on Controversies in Neurology

24 – 27 March 2022 | 16th World Congress on Controversies in Neurology

Continue reading “24 – 27 March 2022 | 16th World Congress on Controversies in Neurology”

Posted on March 27, 2022June 5, 2024Categories Past Events, Past Events 2022

24 – 25 March 2022 | EPNS VIRTUAL Training Course: Acute Paediatric Neurological Diseases

24 – 25 March 2022 | EPNS VIRTUAL Training Course: Acute Paediatric Neurological Diseases

Continue reading “24 – 25 March 2022 | EPNS VIRTUAL Training Course: Acute Paediatric Neurological Diseases”

Posted on March 26, 2022June 5, 2024Categories Past Events, Past Events 2022

7 – 9 March 2022 | 2nd Expert Summit on the Future of Deep Brain Stimulation

7 – 9 March 2022 | 2nd Expert Summit on the Future of Deep Brain Stimulation
Continue reading “7 – 9 March 2022 | 2nd Expert Summit on the Future of Deep Brain Stimulation”
Posted on March 9, 2022June 5, 2024Categories Past Events, Past Events 2022

22 February 2022 | EPNS Case Discussion: Neuromodulation in Dystonia

22 February 2022 | EPNS Case Discussion: Neuromodulation in Dystonia

Continue reading “22 February 2022 | EPNS Case Discussion: Neuromodulation in Dystonia”

Posted on February 22, 2022June 5, 2024Categories Past Events, Past Events 2022

9 February 2022 | EJPRD- ERICA Joint Workshop “Finding RD registry data in the Virtual Platform”

9 February 2022 | EJPRD- ERICA Joint Workshop “Finding RD registry data in the Virtual Platform”

Continue reading “9 February 2022 | EJPRD- ERICA Joint Workshop “Finding RD registry data in the Virtual Platform””

Posted on February 9, 2022June 5, 2024Categories Past Events, Past Events 2022

8 February 2022 | EURORDIS Black Pearl Award Event

8 February 2022 | EURORDIS Black Pearl Award Event

Continue reading “8 February 2022 | EURORDIS Black Pearl Award Event”

Posted on February 8, 2022June 5, 2024Categories Past Events, Past Events 2022

4 – 5 March 2022 | EJP RD workshop: Contemporary outcome measures in NeuroMuscular diseases

4 – 5 March 2022 | EJP RD workshop: Contemporary outcome measures in NeuroMuscular diseases

Continue reading “4 – 5 March 2022 | EJP RD workshop: Contemporary outcome measures in NeuroMuscular diseases”

Posted on January 11, 2022June 5, 2024Categories Past Events, Past Events 2022

9 – 11 December 2021 | Workshop: The Future of Medical Data Sharing in Clinical Neurosciences

9 – 11 December 2021 | Workshop:  The Future of Medical Data Sharing in Clinical Neurosciences
Digital meeting

HBP, EBRAINS and the EAN invite the entire scientific community to join this workshop on the Future of Medical Data Sharing in Neuroscience.

More information.

Posted on December 12, 2021June 5, 2024Categories Past Events, Past Events 2021

8 – 11 December 2021 | European Congress of NeuroRehabilitation 2021

8 – 11 December 2021 | European Congress of NeuroRehabilitation 2021

Jointly with 27. Jahrestagung der Deutschen Gesellschaft für Neurorehabilitation

Continue reading “8 – 11 December 2021 | European Congress of NeuroRehabilitation 2021”
Posted on December 12, 2021June 5, 2024Categories Past Events, Past Events 2021

25 & 26 November 2021 | EPNS accredited VIRTUAL Research Meeting 2021

25 & 26 November 2021 | EPNS accredited VIRTUAL Research Meeting 2021

Continue reading “25 & 26 November 2021 | EPNS accredited VIRTUAL Research Meeting 2021”

Posted on November 26, 2021June 5, 2024Categories Past Events, Past Events 2021

25 November 2021 | EJP RD resource webinar on Orphanet

25 November 2021 | EJP RD resource webinar on Orphanet

Continue reading “25 November 2021 | EJP RD resource webinar on Orphanet”

Posted on November 25, 2021June 5, 2024Categories Past Events, Past Events 2021

22-23 November 2021 | Ataxia Global Initiative symposium

22-23 November 2021 | Ataxia Global Initiative symposium

Continue reading “22-23 November 2021 | Ataxia Global Initiative symposium”

Posted on November 23, 2021June 5, 2024Categories Past Events, Past Events 2021

18 – 19 November | First International conference on Rare Diseases and Paediatric Research

18 – 19 November | First International conference on Rare Diseases and Paediatric Research

Continue reading “18 – 19 November | First International conference on Rare Diseases and Paediatric Research”

Posted on November 20, 2021June 5, 2024Categories Past Events, Past Events 2021

18 – 19 November | MDS 1st Movement Disorders Clinical Practice Conference

18 – 19 November | MDS 1st Movement Disorders Clinical Practice Conference

Continue reading “18 – 19 November | MDS 1st Movement Disorders Clinical Practice Conference”

Posted on November 19, 2021June 5, 2024Categories Past Events, Past Events 2021

4 November | Drug repurposing for rare diseases workshop series

4 November | Drug repurposing for rare diseases workshop series

Continue reading “4 November | Drug repurposing for rare diseases workshop series”

Posted on November 4, 2021June 5, 2024Categories Past Events, Past Events 2021

25 – 27 October | Training: Pluripotent stem cells for rare disease research: banking, data, application (registration deadline 27 September)

25 – 27 October | Training: Pluripotent stem cells for rare disease research: banking, data, application (registration deadline 27 September)

Continue reading “25 – 27 October | Training: Pluripotent stem cells for rare disease research: banking, data, application (registration deadline 27 September)”

Posted on October 26, 2021June 5, 2024Categories Past Events, Past Events 2021

15-16 October 2021 | Italian Mitochondrial Disease Conference 2021

15-16 October 2021 | Italian Mitochondrial Disease Conference 2021
Continue reading “15-16 October 2021 | Italian Mitochondrial Disease Conference 2021”
Posted on October 16, 2021June 5, 2024Categories Past Events, Past Events 2021

15 & 22 October | MDS-ES and EHDN Joint Online Course Series: Huntington’s Disease: From Foundational Principles to Assessment and Treatment

15 &  22 October | MDS-ES and EHDN Joint Online Course Series: Huntington’s Disease: From Foundational Principles to Assessment and Treatment

Continue reading “15 & 22 October | MDS-ES and EHDN Joint Online Course Series: Huntington’s Disease: From Foundational Principles to Assessment and Treatment”

Posted on October 15, 2021June 5, 2024Categories Past Events, Past Events 2021

9 November 2021 | ERN-RND webinar “Clinical Outcome Assessments in Ataxias”

9 November 2021 | ERN-RND webinar “Clinical Outcome Assessments in Ataxias”

Continue reading “9 November 2021 | ERN-RND webinar “Clinical Outcome Assessments in Ataxias””

Posted on October 10, 2021June 5, 2024Categories Past Events, Past Events 2021

12 October 2021 | ERN-RND webinar “Functional gait disorders: a sign-based approach”

12 October 2021 | ERN-RND webinar “Functional gait disorders: a sign-based approach”

Continue reading “12 October 2021 | ERN-RND webinar “Functional gait disorders: a sign-based approach””

Posted on October 10, 2021June 5, 2024Categories Past Events, Past Events 2021

19 October 2021 | ERN-RND webinar “Oligonucleotide therapies: a new class of drugs that allow precise genetic targeting”

19 October 2021 | ERN-RND webinar “Oligonucleotide therapies: a new class of drugs that allow precise genetic targeting”

Continue reading “19 October 2021 | ERN-RND webinar “Oligonucleotide therapies: a new class of drugs that allow precise genetic targeting””

Posted on October 10, 2021June 5, 2024Categories Past Events, Past Events 2021

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Webinar Schedule

Latest News

  • 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 »
  • John Gerbild elected as Board Director for EURORDIS

    May 19, 2025
    We are happy to announce that our patient advocate John Gerbild (representative for: Ataxia/HSP) is now a newly elected Board …read more »

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ERN-RND

@ern-rnd.bsky.social

140 Followers 84 Following 109 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/webinars/

  • Get to this post

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

    #EAN2025: Join Carola Reinhard this Sunday at 16:25 CEST to learn more about ERN-RND and improving care for rare neurological diseases.

    More information here: https://f.mtr.cool/ndcjsvgvss
  • Get to this post

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

    #EAN2025: Join us on Monday at 16:25 CEST to learn more about current practices regarding genetic therapies in Europe by our coordinator Holm Graessner.

    More information here: www.eanvirtualcongress.org/ean/ean2025/...
  • Get to this post

    ERKNet - European Reference Network for Rare Kidney Diseases @erknet.bsky.social 1 week

    Upcoming ERKNet Webinar! 📢

    📝Topic: Anti-Factor H Auto-Antibodies
    🗓️ Date: June 24, 2025
    ⏰ Time: 4:00–5:00 PM CET
    👩‍⚕️ Speaker: Michal Malina

    👉 Register now: register.gotowebinar.com/register/711...

    🌞ERKNet webinars will take a summer break after this session. We wish everyone a wonderful summertime!
  • Get to this post

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

    Learn more about #RareNeurologicalDisease s in our monthly #newsletter:
  • Get to this post

    ERDERA @erdera.bsky.social 1 week

    Make your voice heard! 🗣️ #ERDERA has launched a survey to explore how #RareDisease patients can contribute to EU-funded research.
    🔐 Confidential & 🤝 Co-created with patients
    🔗 Take the survey: shorturl.at/ePVuL (open until mid-July)
    📄 Learn more: shorturl.at/c03db
  • Get to this post

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

    #Study on #MonogenicDystonia: Despite considerable achievements in genetics in #dystonias, their response to possible treatment such as #DeepBrainStimulation (DBS) remains to be elucidated. ERN-RND is performing a systematic review on the efficacy of #DBS.
  • Get to this post

    JARDIN Joint Action @jardinjointaction.bsky.social 1 week

    ❓ Have you heard of the #ERNs?

    🔎 Discover the 24 European Reference Networks and how they support people living with rare diseases or complex conditions across Europe.

    🌍 Visit the JARDIN website to explore them all!

    👉 jardin-ern.eu/european-ref...

    #RareDiseases #PatientVoice #EU4Health

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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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