Communicating and counselling patients – ERN-RND | European Reference Network on Rare Neurological Diseases

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

Treatment of spasticity in children with rare neurological disorders – who, why, when and what?

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

Speaker: Annemieke Buizer
Amsterdam UMC, The Netherlands

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

Insights into growing up in families affected by Huntington’s disease

28 Nov. 2023

Speaker: Siri Kjølaas
Oslo University Hospital, Centre for rare disorders, Oslo, Norway

X-Linked leukodystrophies – Update

7 Oct. 2021

Speaker: Caroline Sevin
Reference Center for Leukodystrophies, Hôpital de Bicêtre and ICM (institute of Brain and Spine), Paris, France

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 »

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ERN-RND @ern-rnd.bsky.social 3 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:
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ERN-RND @ern-rnd.bsky.social 4 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
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ERN-RND @ern-rnd.bsky.social 4 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

#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
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ERN-RND @ern-rnd.bsky.social 6 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
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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 @ern-rnd.bsky.social 1 week

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: