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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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Patient information – Frontotemporal dementia – Adult

Please note that this section includes useful information from a variety of sources provided by ERN-RND members but which hasn’t been endorsed by ERN-RND.

Multiple languages:

  • Disease specific patient education handouts by the Movement Disorders Society

German language:

  • DESCRIBE-FTD – Klinische Registerstudie zu Frontotemporaler Demenz by Deutsches Zentrum für Neurodegenerative Erkrankungen e. V. (DZNE)

     


Webinar Schedule

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ERN-RND

@ern-rnd.bsky.social

165 Followers 90 Following 182 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 Academy of Neurology @ean.org 2 days

    Join Europe’s leading minds in neuroscience, innovation, and policy for the #EBRAINSSummit2025 – Transforming Brain Research and Medicine – live in Brussels on 8-11 December!

    🔗 Register here: summit2025.ebrains.eu
  • Get to this post

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

    "MLD Treatment Eligibility - Pitch and Live Case Discussion". Nicole Wolf shares insights at our Symposium "European Healthcare for RND Patients", Oct 28 11:30 CET.
    Registration: https://f.mtr.cool/mpyqdaaqli
    Program: https://f.mtr.cool/qxrjzcwauh
    Abstract: f.mtr.cool/gyblgukxvx
  • Get to this post

    ERDERA @erdera.bsky.social 4 days

    What are European Reference Networks (ERNs) and what is their role in the rare disease ecosystem?💡In ERDERA, ERNs are central to our mission, acting as gateways to clinicians and patients across Europe 👀 https://loom.ly/FCHBS38
  • Get to this post

    ERDERA @erdera.bsky.social 5 days

    Regulatory news | 🗞️ The EMA and EU partners have released the final report of the EU Repurposing Pilot, supporting new uses for off-patent medicines in rare diseases and paediatric care.
    🔗 Access the report: https://loom.ly/zcpVZfg
    👉 Find out more: https://loom.ly/afsfGWA
    #ERDERA #RareDiseases
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    ERN-RND @ern-rnd.bsky.social 6 days

    Join us to learn about "National Support of ERN Members" with Pavla Doležalová at our Symposium "European Healthcare for RND Patients", Oct 28, 13:00https://f.mtr.cool/xjwsmnhdbu.mtr.cool/https://f.mtr.cool/wdrklamqcs.mtr.cool/whttps://f.mtr.cool/gyblgukxvx.mtr.cool/gyblgukxvx
  • Get to this post

    European Academy of Neurology @ean.org 6 days

    Start your journey toward becoming a certified Ambassador for Neurology and Brain Health!🧠

    Applications are NOW OPEN for the third edition of the EAN Advocacy Training Programme!

    ➡️More info on the programme, eligibility, and application: buff.ly/CxmJCr3
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    ERDERA @erdera.bsky.social 7 days

    🔬 Exciting news: ERDERA joins forces with the European Genomic Data Infrastructure project (GDI) to advance rare disease research and diagnosis across Europe. Launching 14 Oct in Paris. 🌍 👉 Read more: https://loom.ly/7lthRbQ
    #RareDiseases #GenomicData #1MGenomes

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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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