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
    • Leukoencephalopathies
    • Atypical Parkinsonism: MSA, PSP & Genetic Parkinson’s Disease
    • ERN-RND Patient Journeys
  • Education & Training
    • Online Medical Education
    • Upcoming Webinars
    • Training Resources
    • Webinars from Partners
    • Winter School
  • ERN-RND Registry
    • ERN-RND registry objectives
    • Disease Groups covered
    • Data Submission
      • Data Analysis 2023
    • 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

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

Find us on Bluesky

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 8 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 11 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-...
  • Get to this post

    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
  • Get to this post

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

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.