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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: RND-General

Guidelines on the assessment and treatment of neurogenic urinary and sexual symptoms (NEUROGED Guidelines)

Guidelines on the assessment and treatment of neurogenic urinary and sexual symptoms (NEUROGED Guidelines)

11 Nov. 2025 | 3 – 4 pm CET
Zoom Registration

Speaker: Alessandra Fanciulli & Pietro Guaraldi
Medical University Innsbruck, Austria
IRCCS – Institute of Neurological Sciences of Bologna, Italy

Recording

Slides

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

Patient Journeys: Reliable Comprehensive Documents which Summarise a Rare Disease

Patient Journeys: Reliable Comprehensive Documents which Summarise a Rare Disease

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

Introduction – systematics of non-neurological aspects

Introduction – systematics of non-neurological aspects

Winter school 2025 “Challenges of treating rare neurological diseases”
14 Mar. 2025

Speaker: Michèl Willemsen
Radboudumc, Nijmegen, The Netherlands

Recording

Treatment of nano-rare neurological diseases

Treatment of nano-rare neurological diseases

Winter school 2025 “Challenges of treating rare neurological diseases”
12 Mar. 2025

Speaker: Marlen Lauffer
Leiden University Medical Center​, The Netherlands

Recording

Treatment of Aromatic l-amino acid decarboxylase (AADC) deficiency

Treatment of Aromatic l-amino acid decarboxylase (AADC) deficiency

Winter school 2025 “Challenges of treating rare neurological diseases”
12 Mar. 2025

Speaker: Thomas Opladen
University Children’s Hospital Heidelberg, Germany

Recording

Genetic therapies and therapy developments for rare movement disorders

Genetic therapies and therapy developments for rare movement disorders

23 Jul. 2024

Speaker: Willeke van Roon-Mom
Leiden University medical center, Netherlands

Recording

Antisense oligonucleotide mediated exon skipping therapy development for Duchenne muscular dystrophy takes more than an oligonucleotide

Antisense oligonucleotide mediated exon skipping therapy development for Duchenne muscular dystrophy takes more than an oligonucleotide

29 Mar. 2022

Speaker: Annemieke Aartsma-Rus
Leiden University Medical Center, Netherlands;
Dutch Center for RNA Therapeutics (DCRT)

Recording

Slides

ASO RNA splice modulating therapies for genetic brain disorders

ASO RNA splice modulating therapies for genetic brain disorders

25 Jan. 2022

Speaker: Willeke van Roon-Mom
Leiden University Medical Center, Netherlands

Recording

Slides

Oligonucleotide therapies: a new class of drugs that allow precise genetic targeting

Oligonucleotide therapies: a new class of drugs that allow precise genetic targeting

19 Oct. 2021

Speaker: Annemieke Aartsma-Rus
Leiden University Medical Center, Netherlands

Recording

Slides

Functional gait disorders: a sign-based approach

Functional gait disorders: a sign-based approach

12 Oct. 2021

Speaker: Jorik Nonnekes
Radboud University Medical Centre, Nijmegen, Netherlands

Recording

Slides

How can we develop and implement evidence based rehabilitation in rare disorders?

How can we develop and implement evidence based rehabilitation in rare disorders?

29 Sep. 2020

Speaker: Hortensia Gimeno
Guy’s and St Thomas’ NHS Foundation Trust, London, United Kingdom

Recording

How to assess and manage spastic gait in rare diseases

How to assess and manage spastic gait in rare diseases

10 Sep. 2020

Speaker: Gál Ota
Charles University and General University Hospital, Prague, Czech Republic

Recording

Slides

Goal setting and outcome measures of interventions in pediatric rehabilitation.

Goal setting and outcome measures of interventions in pediatric rehabilitation.

18 Jun. 2020

Speaker: Annemieke Buizer
VU University Medical Center Amsterdam, Netherlands;
Emma Children’s Hospital, Amsterdam, Netherlands

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

150 Followers 84 Following 132 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 14 hours

    #WorldBrainDay is coming up on July 22! "What would you change in the health care system for rare neurological diseases if you could change only one thing to make it better?"

    This is what our patient representative Ruth Blanco would change first: www.youtube.com/watch?v=-YWk...
  • Get to this post

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

    July 22 is #WorldBrainDay! "If you could change only one thing in the health care system for rare neurological diseases to make it better what would you choose?" This is what we asked our network.

    ERN-RND clinician Julie Martinkova would change this:
  • Get to this post

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

    Hospitality as core value for patients - this is what our patient representatives learned and experienced themselves about the , when visiting this ERN-RND expert center.

    Read article: https://f.mtr.cool/utrdfmaoso
  • Get to this post

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

    Hospitality as core value for patients - this is what our patient representatives learned and experienced themselves about the , when visiting this ERN-RND expert center.

    Read article: https://f.mtr.cool/utrdfmaoso
  • Get to this post

    ERN-RND @ern-rnd.bsky.social 6 days

    #WorldBrainDay is coming up on July 22! "What would you change in the health care system for rare neurological diseases if you could change only one thing to make it better?" This is what we asked our network.

    This is what our ERN-RND clinician Yury Seliverstov would change: youtu.be/fLyijvhkwpU
  • Get to this post

    ERN-RND @ern-rnd.bsky.social 7 days

    Whether neurologist, patient, patient advocate or carer - if you are specialized in or affected by #RareNeurologicalDiseases and movement disorders, then you shouldn't miss our monthly newsletter with lots of news, disease knowledge, publications, webinars and events: tinyurl.com/383u46cz
  • Get to this post

    ERN-RND @ern-rnd.bsky.social 1 week

    #WorldBrainDay in coming up on July 22 - how can we improve the health care system for rare neurological diseases? We asked our network what they would choose if they could chnge only one thing. This is what Iva Galovic from our partner org. #WorldBrainDay would choose:

    www.youtube.com/watch?v=vAlr...

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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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