Skip to content
  • Facebook
  • LinkedIn
  • Bluesky
  • YouTube
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
    • Diseases Groups Covered
    • ERN-RND coordinators
    • ERN-RND coordination office
    • ERN-RND board
    • Patient advocates
    • Work Packages
    • Monitoring
    • Publications Acknowledging ERN-RND
  • Expert Centres
    • … for rare neurological diseases
    • Full members and affiliated partners
    • How to contact expert centres
    • Supporting partners
    • 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
    • Neuroradiology Expert Advice Panel
    • Multidisciplinary Board for DBS in Dystonia
    • CPMS Helpdesk
    • Videos
    • Downloads
    • Websites
  • Disease Knowledge
    • Cerebellar Ataxia & Hereditary Spastic Paraplegias (HSPs)
    • Chorea & Huntington’s disease
    • Dystonias, NBIA and Paroxysmal Disorders
    • Frontotemporal dementia
    • Leukodystrophies
    • Atypical Parkinsonism: MSA, PSP & Genetic Parkinson’s Disease
    • ERN-RND Patient Journeys
  • Education & Training
    • Postgraduate Curriculum in Rare Neurological Diseases
      • Module: Ataxia/HSPs
    • Online Medical Education
    • Upcoming Webinars
    • Training Resources
    • EURO-NMD Webinars
    • Webinars from Partners
    • Winter / Spring Schools
  • ERN-RND Registry
    • ERN-RND registry objectives
    • Disease Groups covered
    • Data Submission
      • Data Analysis
    • Data Access
    • Contact
  • Collab­ora­tions
    • Projects
    • Partner organisations
    • Past projects
      • 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
        • Objectives of the VoT project
        • ERN-RND in VoT2
        • Academic partners in VoT2
        • Further reading
  • News & Events
    • News
    • Events
    • Newsletter
    • Meet the members
  • Contact us
  • Facebook
  • LinkedIn
  • Bluesky
  • YouTube

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

Find us on Bluesky

ERN-RND

@ern-rnd.bsky.social

192 Followers 92 Following 294 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/

  • View post by ERN-RND on Bluesky

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

    What should registries deliver for patients? Patient advocate Mary Kearney will talk about the patient perspective on registries at 08:55 CEST. Join us now: www.ern-rnd.eu/scientific-s...
  • View post by ERN-RND on Bluesky

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

    Next one up is Nicole Wolf with a framework for multistakeholder patient registries for RNDs. Join our talk online: www.ern-rnd.eu/scientific-s...
  • View post by ERN-RND on Bluesky

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

    Why do registries matter for rare neurological diseases? Join our Keynote with Thomas Klockgether at 08:05 CEST now: www.ern-rnd.eu/scientific-symposium-resgistries-for-rnd/
  • View post by ERN-RND on Bluesky

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

    Today it's all about "Registries in RND" - our Symposium is about to start at 8 CEST and you can still join us online (free of charge)!

    Programme and registration: www.ern-rnd.eu/scientific-s...
  • View post by ERN-RND on Bluesky

    ERN-RND @ern-rnd.bsky.social 16 hours

    Closing the day with a poster session & quiz and a lot of networking over drinks and finger food! We're looking forward to our Symposium "Registries on RND" - if you want to learn more about this register now and join us remotely tomorrow: www.ern-rnd.eu/scientific-s...
  • View post by ERN-RND on Bluesky

    ERN-RND @ern-rnd.bsky.social 18 hours

    Last one up today: the Neurorehabilitation working group, discussing about the use of digital tools and AI.
  • View post by ERN-RND on Bluesky

    ERN-RND @ern-rnd.bsky.social 20 hours

    After some welcoming words by our host Enrico Bertini we continued with the presentation of our patient advocates, introducing their new project on creating a support pack for patients on our website. Afterwards the disease group meetings for frontotemporal dementia as well as HSPs & Ataxias were up

Find us on Facebook

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

  • Facebook
  • LinkedIn
  • Bluesky
  • YouTube

Sitemap | Disclaimer and Data Protection

We serve cookies on this site to analyse traffic, remember your preferences, and optimise your experience.