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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

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 »

Find us on Bluesky

ERN-RND

@ern-rnd.bsky.social

146 Followers 84 Following 125 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 2 days

    July 22 is #WorldBrainDay - we asked our network what they would change in the healthcare system for RND if they could change only one thing in order to improve it.
    This is what our ERN-RND clinician Kleopas Kleopa would focus on:
  • Get to this post

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

    #WorldBrainDayJuly22: If you could change 1 thing in the health care system for #RareNeurologicalDiseases to improve something, what would you choose and why?

    This is what our ERN-RND member Mika Martikainen would prioritize:

    youtu.be/WOqs5kEdNPw

    #WorldBrainDay2025 #WorldBrainDay25 #BrainHealth
  • Get to this post

    ERN-RND @ern-rnd.bsky.social 5 days

    #FriedreichAtaxia (FA) is progressive, meaning what you can do keeps changing. When you think you have gotten to understand FA, something new happens - says Brona Kearney, who has been living with FA for the past 23 years.
    How does this disease affect a patient's life? This is Brona's story.
  • Get to this post

    EHDN News @ehdn-news.bsky.social 5 days

    Listen to our latest podcast! www.youtube.com/watch?v=fEg4...
  • Get to this post

    EHDN News @ehdn-news.bsky.social 5 days

    Our 55th issue opens with a tribute to our much-loved and sadly missed colleague, Tim McLean. Highlights include a call to action from EHDN’s HEATED task force, clinical trial updates, and an interview with Daniel Claassen, Chief Executive Officer @ Huntington Study Group: ehdn.org/wp-content/u...
  • Get to this post

    ERN-RND @ern-rnd.bsky.social 5 days

    #WorldBrainDay is coming up on July 22! We asked our network: "If you could change one thing in the health care system for Rare Neurological Diseases what would that be and why?"

    This is what our patient representative Mary Kearney (Friedreich's #Ataxia) said.

    #WorldBrainDay2025 #WorldBrainDay25
  • Get to this post

    ERN EuroBloodNet @erneurobloodnet.bsky.social 1 week

    💻​Don't miss the ERN-EuroBloodNet #ThursdayWebinar session on "Gene therapy for Pyruvate Kinase Deficiency and Congenital Dyserythropoietic Anemia Type II”!

    🗓️3rd July - 17:00h CEST.
    👉Registrations: eurobloodnet.eu/education/th...

    #ERNeu #ERNs #HealthUnion #EU4Health #ShareCareCure #hematology

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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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