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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

The Importance of Genetic Counselling in the Diagnostic of Rare Neurological Disorders

The Importance of Genetic Counselling in the Diagnostic of Rare Neurological Disorders

09 December 2025 | 1 – 2 pm CET
Zoom Registration

Speaker: Maria Judit Molnar
Semmelweis University, Budapest, Hungary

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)

25 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

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

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

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ERN-RND

@ern-rnd.bsky.social

172 Followers 90 Following 216 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 19 hours

    ⚠️Updated time! No#webinarM CET
    💻 Upcoming #webinar on “The importance of Genetic Counselling in the Diagnostic of Rare Neurological Disorders”
    📅 9th December
    🗣️ Maria Judit Molnar, Semmelweis University, Buhttps://t1p.de/d825h up 👉https://t1p.de/d825h
    Joint with the and
  • Get to this post

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

    💻 Upcoming #webinar on “The importance of Genetic Counselling in the Diagnostic of Rare Neurological Disorders”
    📅 9th December
    ⚠️Updated time: now at 1 PM CET.
    🗣️ Maria Judit Molnar, Semmelweis University, Budapest, Hungary
    Sign up 👉https://t1p.de/d825https://t1p.de/d825hps://bsky.app/hashtag/webinar">#webinar and
  • Get to this post

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

    One last time #RareNeurologicalDisease news and events in 2025! Stay up to date with the latest developments in rare neurological disorders — including #HuntingtonDisease, #HSP, #Dystonia, #MSA, #Leukodystrophies, #FrontotemporalDementia — with our monthly newsletter: https://f.mtr.cool/nvtixiqcex
  • Get to this post

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

    Join us for this "High Level Meeting on a European Innovation and Care Ecosystem for Rare and Complex Diseases" on December 9-12, 2025 - remotely. More information: www.brains4brain.eu/eu-activitie...
  • Get to this post

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

    Children with GNAO1-related disorders often face developmental delays and challenging movement disorders. For some, #DeePBrainStimulation can be a life-changing intervention. To support parents during this process, our members at Hospital #DeePBrainStimulation createdinformation flyers. #GNAO1
  • Get to this post

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

    📢 !NEW TIME!
    👉 Our free webinar with Maria Judit Molnar on #GeneticCounselling for #RareNeurologicalDiseases next week will be at 1pm CET instead of the usual time at 3 pm.
    If you haven't registered yet, don't miss out and join us next Tuesday: t1p.de/d825h
  • Get to this post

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

    💻 Upcoming #webinar on “The importance of Genetic Counselling in the Diagnostic of Rare Neurological Disorders”
    📅 9th December, 3:00 CET
    🗣️ Maria Judit Molnar, Semmelweis University, Budapest, Hungary

    Sign up 👉https://t1p.de/d825https://t1p.de/d825htps://bsky.app/hashtag/webinar">#webinar and

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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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