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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

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 as working documents to identify gaps in care and adapt care pathways and better meet the needs of patients

Patient Journeys as working documents to identify gaps in care and adapt care pathways and better meet the needs of patients

23 Sep Apr. 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

Neuroimaging in frontotemporal dementias

Neuroimaging in frontotemporal dementias

Winter school 2023 “Neuroimaging”
25 Mar. 2023 | 3 – 4 pm CEST

Speaker: Vassilis Constantinides
Eginitio University Hospital Athens, Greece

Recording

Slides

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

Better Conversations – Communication Partner Training for language led dementias

Better Conversations – Communication Partner Training for language led dementias

4 May 2021

Speaker: Anna Volkmer
University College London, United Kingdom

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

  • 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 »

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ERN-RND

@ern-rnd.bsky.social

147 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 3 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 5 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 6 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 6 days

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

    EHDN News @ehdn-news.bsky.social 6 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 7 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 2 weeks

    💻​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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