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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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Disease Group: Frontotemporal dementia

Fluid Biomarkers in FTD

Fluid Biomarkers in FTD

02 December 2025 | 3 – 4 pm CET
Zoom Registration

Speaker: Domenico Plantone
AOU – University Hospital Siena, Italy

Scientific Symposium “European healthcare for RND patients”

Scientific Symposium “European healthcare for RND patients”

28 Oct. 2025 | 8 am CET
Zoom Registration

Speaker: Different Speakers
Part of the ERN-RND Annual Meeting Care-RND25

Recording

Slides

Social and Lifestyle Issues Related to FTD and PPA

Social and Lifestyle Issues Related to FTD and PPA

30 Sep. 2025 | 3 – 4 pm CEST
Zoom Registration

Speaker: Alexa Häger
University Hospital Aachen, Germany

Patient Journeys: Reliable Comprehensive Documents which Summarise a Rare Disease

Patient Journeys: Reliable Comprehensive Documents which Summarise a Rare Disease

23 Sep. 2025 | 3 – 4 pm CEST
Zoom Registration

Speaker: Petya Mihaylova & Mary Kearney
Irish Consortium: Tallaght University Hospital and Children’s Health Ireland & FARA Ireland

Recording

Slides

Neurological and non-neurological aspects in palliative care of FTD and PPA patients

Neurological and non-neurological aspects in palliative care of FTD and PPA patients

16 Sep. 2025 | 3 – 4 pm CEST
Zoom Registration

Speaker: Renate Wahl
University Hospital Aachen, Germany

Recording

Slides

Neuropsychological assessment in primary progressive aphasia – recommendations and pitfalls in clinical practice

Neuropsychological assessment in primary progressive aphasia – recommendations and pitfalls in clinical practice

27 Feb. 2024

Speaker: Lize Jiskoot
Erasmus Medical Center Rotterdam, Netherlands

Recording

Frontotemporal dementia vs. primary psychiatric disorders

Frontotemporal dementia vs. primary psychiatric disorders

23 May 2023

Speaker: Tim van Langenhove
University Hospital Ghent, Belgium

Slides

Non-pharmacological approaches to treatment in svPPA

Non-pharmacological approaches to treatment in svPPA

9 May 2023

Speaker: Ana Sofia Costa
RWTH-University Hospital Aachen, Germany

Recording

FTD- in whom, when and how genetic testing should be applied

FTD- in whom, when and how genetic testing should be applied

14 Mar. 2023

Speaker: Laura Donker Kaat
Erasmus Medical Center Rotterdam, Netherlands

Recording

Use of Biomarkers to monitor the presymptomatic phase of Genetic FTD: research advances for clinical trial readiness

Use of Biomarkers to monitor the presymptomatic phase of Genetic FTD: research advances for clinical trial readiness

22 Nov. 2022

Speaker: Harro Seelaar & Dario Saracino
Erasmus University Medical Center, Rotterdam, Netherlands;
APHP – Pitié-Salpêtrière Hospital, Paris, France

Slides

Tau-targeting Therapies: Where are we heading to?

Tau-targeting Therapies: Where are we heading to?

20 Sep. 2022

Speaker: Günter Höglinger
Medical Schhol Hannover, Germany

Recording

The logopenic variant of primary progressive aphasia (lvPPA): language, cognitive, neuroradiological issues’

The logopenic variant of primary progressive aphasia (lvPPA): language, cognitive, neuroradiological issues’

5 Apr. 2022

Speaker: Robert Rusina & Zsolt Cséfalvay
Thomayer Hospital, Prague, Czech Republic; Comenius University in Bratislava, Slovakia

Slides

The overlap between the spectrum of frontotemporal dementias and atypical Parkinsonism

The overlap between the spectrum of frontotemporal dementias and atypical Parkinsonism

8 Feb. 2022

Speaker: Vasilios Constantinides
National and Kapodistrian University of Athens, Greece.

Recording

Slides

Challenges in Frontotemporal Dementia: clinical, genetic and pathological heterogeneity

Challenges in Frontotemporal Dementia: clinical, genetic and pathological heterogeneity

23 Mar. 2021

Speaker: Harro Seelaar
Erasmus University Medical Center, Rotterdam, Netherlands

Recording

Semantic variant of primary progressive aphasia

Semantic variant of primary progressive aphasia

8 Sep. 2020

Speaker: Robert Rusina
Thomayer Hospital, Prague, Czech Republic

Recording

Slides

Primary progressive aphasia subtyping in clinical practice

Primary progressive aphasia subtyping in clinical practice

26 May. 2020

Speaker: Rik Vandeberghe
University Hospital Leuven, Belgium

Recording

Slides

Webinar Schedule

Latest News

  • ePAG visit at Children’s Hospital Sant Joan de Déu, Barcelona

    July 7, 2025
    Having a rare disease means spending a lot of time around doctors and hospitals. Places, that even adults will not …read more »
  • 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 »

Find us on Bluesky

ERN-RND

@ern-rnd.bsky.social

154 Followers 87 Following 147 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 6 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 1 week

    Participate in the #EU4Health #Survey on current and future health priorities till September 30! The #Survey is inviting interested stakeholders to share their views on future priorities, orientations and needs for the future of the EU4Health programme.
    hadea.ec.europa.eu/news/targete...
  • Get to this post

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

    What's the status on European #healthcare for rare neurological diseases in #ERNs?

    Join our Symposium on October 28 online (free of charge): tinyurl.com/yc3yts72

    Find the programme here: www.ern-rnd.eu/wp-content/u...
  • Get to this post

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

    Join our free symposium on European Healthcare for RND patients!
  • Get to this post

    European Paediatric Neurology Society (EPNS) @epnsnews.bsky.social 2 weeks

    Stay ahead in #PaediatricNeurology by reading the #EPNS2025 Abstract Book to get quick insights into the latest research, treatments, and breakthroughs:
    epns-congress.com/wp-content/u...
  • Get to this post

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

    💻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
  • Get to this post

    European Paediatric Neurology Society (EPNS) @epnsnews.bsky.social 2 weeks

    Next FREE YEPNS Case Discussion!

    Join us for an interactive journey through three compelling paediatric neurology cases—from clarity to enigma.

    Register at: us02web.zoom.us/webinar/regi...

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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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