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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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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

157 Followers 88 Following 164 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 11 hours

    Join the 3rd Channelopathy Meeting on 23-25 September 2025, Tübingen (Germany) and online to learn and discuss current research issues around rare ion channel diseases and transporter disorders and share latest results.

    Registration & Agenda: ec.europa.eu/eusurvey/run...
  • Get to this post

    ERN-RND @ern-rnd.bsky.social 13 hours

    "Just like Home" - Stefano Zancan will talk about this Program at Fondazione Telethon in our Scientific Symposium "European Healthcare for RND Patients" on October 28, 8:40 CET.
    Registration (free of charge): tinyurl.com/p8wrbucf
    Program: tinyurl.com/4zbdvuty
  • Get to this post

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

    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 1 day

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

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

    💻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 3 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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