Ern-Rnd European Reference Network for Rare Neurological Diseases

05/08/2025

05/08/2025

Want to be actively involved in the activities of the YEPNS?

Learn more - https://epns.info/young-epns-yepns/

Join for FREE! - https://epns.info/young-epns-yepns-free-subscription-form/

04/08/2025

Join our Scientific Symposium on "European Healthcare for RND Patients" on October 28 online! Free registration: https://us02web.zoom.us/webinar/register/WN_NUr6BAsER2K2FozaHBk6nw #/registration

Find the programme here:https://www.ern-rnd.eu/wp-content/uploads/2025/07/Programme_Scientific_Symposium_2025.pdf

30/07/2025

Movement Disorders affect also children and therefore paediatric scales are needed. Although there are quite a few, there has been no standard yet on which one to use at which age, what treatment in which frequency and so on.

And this can lead to an inconsistent care for children.

Therefore, a standardization for the use of paediatric rating scales is needed. Our ERN-RND clinician Juan Dario Ortigoza Escobar from Hospital Sant Joan de Déu Barcelona gives an insight on this project and also talks about the next steps, including new rating scales, like a developmental rating scale or a quality of life rating scale.

Watch the video interview to learn more about this project.

Find the publication here: https://www.sciencedirect.com/science/article/pii/S1090379824000977?via%3Dihub

30/07/2025

22/07/2025

🧠Your Brain - 🌍
This years theme is 'Brain Health for All Ages' - "because brain health matters at every stage of life, from the very beginning through aging adulthood." WFN

Ireland needs more investment into neuro-rehabilitation services. This would give everyone the chance to access "The Right Care in The Right Place" with no waiting list.

Early intervention is vital!

"Access to neurological care, diagnostics, and therapies should not be determined by where you live." WFN

Cavernoma symptoms can start at any age.




World Federation of Neurology - WFN
Neurological Alliance of Ireland (NAI)

European Federation of Neurological Associations
Ern-Rnd European Reference Network for Rare Neurological Diseases

22/07/2025

Today is ! There are many gaps in the European systems for rare neurological diseases - but if you could change only to make it better, what would you choose? This is what we asked our network - find out what our clinicians, patient advocates and patient organizations we work with think about that.

And you? What would you change? Let us now what you think!
https://youtu.be/y6XCyn8jIKU





- European Paediatric Neurology Society EURORDIS-Rare Diseases Europe Huntington Association European Federation of Neurological Associations European Academy of Neurology Euro-ataxia Dystonia Europe Epicare ERN Hospital Sant Joan de Déu Barcelona Jardin Joint Action Erdera Association Huntington France Българска Хънтингтън Асоциация - Bulgarian Huntington Association John Gerbild Alex TLC Rare Disease Day

There are many gaps in the health care system for rare neurological diseases - but if you could change only thing to make it better, what would you choose?Th...

21/07/2025

We translated our children's book for ALD into Spanish and German and shared these with other leukodystrophy organisations around the world 🌍 We hope they will help to act as a resource to support the siblings of children diagnosed with CCALD in other countries 📕

The book has recently been shared by Ern-Rnd European Reference Network for Rare Neurological Diseases:
https://www.ern-rnd.eu/disease-knowledge-hub/leukodystrophies/

We hope in the future to translate into to further languages to make it more accessible to those who could benefit from it 💙

21/07/2025

One more day till : "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 ERN-RND clinician Rebecca Schuele would change: https://f.mtr.cool/iqbvsqlzgv

World Brain Day is coming up on July 22 - help raise awareness!

18/07/2025

22 July is : "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 ERN-RND clinician Vassilis Constantinides would change: https://youtu.be/wqfGY7LBVUM

World Brain Day is coming up on July 22 - help raise awareness!

17/07/2025

5 more days till : "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 ERN-RND clinician Jana Dominguez Carral from the Hospital Sant Joan de Déu Barcelona would change first: https://youtu.be/ccZAEFFrj2U

World Brain Day is coming up on July 22 - help raise awareness!

16/07/2025

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 ERN-RND clinician David Gomez would change first: https://youtu.be/ukLl6jpNkCM

World Brain Day is coming up on July 22 - help raise awareness!