Ern-Rnd European Reference Network for Rare Neurological Diseases

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Ern-Rnd European Reference Network for Rare Neurological Diseases

The ERN-RND provides an infrastructure for knowledge sharing and care coordination.

The official page of the European Reference Network for rare neurological diseases in Europe (ERN-RND). Ultimately, ERN-RND pursues knowledge generation and dissemination activities that are both disease group specific and overarching. The overall aim of the ERNs is to improve access for patients with rare diseases to quality diagnosis, care and treatment. We are looking forward to comments, hints and questions and hope for a good exchange around the topic of rare neurological diseases in Europe.

17/09/2026

What are patient perspectives on registries? Our patient advocate Mary Kearney will give us an insight on the patient's and families' perspective during our "Registries for RND" on October 10.

Join online for free and register now: https://us02web.zoom.us/webinar/register/WN_m-8eQwGwTge3kXUTOtAzUg #/registration

Find the programme here:https://www.ern-rnd.eu/wp-content/uploads/2026/08/Programme_ScientificSymposium2026_RegistriesForRND.pdf

16/09/2026

Join our Symposium on October 10 and learn more on the NKX2-1 Registry by Dario Ortigoza:

NKX2-1 Registry: Building an International Disease Registry in a Very Rare Disorder

Register now for online participation (free of charge): https://us02web.zoom.us/webinar/register/WN_m-8eQwGwTge3kXUTOtAzUg #/registration

Find the whole programme here:https://www.ern-rnd.eu/wp-content/uploads/2026/07/Programme_ERN-RND_ScientificSymposiumOctober10_Newsletter.pdf

15/09/2026

Countless visits to doctors, the feeling of "something's wrong", be...

15/09/2026

Get the latest news on Rare Neurological Diseases with our monthly - this month: Postgraduate Curriculum on Ataxias and HSPs, Scientific Symposium on "Registries for RND", three new publications on testing in , on the effect of on vanishing white matter (also as podcast) and one on the impact of solve-RD reanalysis as well as a guideline for "Consensus-Based Expert Recommendations for Diagnosis and Clinical Management of Vanishing White Matter". And as always you will find information on our upcoming webinars and further events. Enjoy reading!

https://www.ern-rnd.eu/mailpoet-email/1d048ac629ba-ern-rnd-newsletter-september-2026/

15/09/2026

Join our Symposium on October 10 and learn more about Registries for Rare Neurological Diseases - online and free of charge, register now: https://us02web.zoom.us/webinar/register/WN_m-8eQwGwTge3kXUTOtAzUg #/registration

Programme:https://www.ern-rnd.eu/wp-content/uploads/2026/07/Programme_ERN-RND_ScientificSymposiumOctober10_Newsletter.pdf

15/09/2026

Last chance to sign up for our upcoming webinar:
💻 Upcoming joint with ERN EURO-NMD and the Academy of Neurology
📚 Diagnostics and Treatment of Dystonia
📅 15 September, 3-4pm CET
🗣️ Dénes Zádori, Department of Neurology, University of Szeged

Sign up to our free educational webinar
👉
https://t1p.de/bdiog

14/09/2026

It is still possible to sign up for our upcoming webinar:
💻 Upcoming joint with ERN EURO-NMD and the Academy of Neurology
📚 Diagnostics and Treatment of Dystonia
📅 15 September, 3-4pm CET
🗣️ Dénes Zádori, Department of Neurology, University of Szeged

Sign up to our free educational webinar
👉
https://t1p.de/bdiog

09/09/2026

💻 Upcoming joint with ERN EURO-NMD and the Academy of Neurology
📚 Diagnostics and Treatment of Dystonia
📅 15 September, 3-4pm CET
🗣️ Dénes Zádori, Department of Neurology, University of Szeged

Sign up to our free educational webinar
👉
https://t1p.de/bdiog

08/09/2026

Last chance to sign up for our upcoming webinar:
💻 Upcoming joint with ERN EURO-NMD and the Academy of Neurology
📚 Social and life style issues related to ataxias and HSP
📅 08 September, 3-4pm CET
🗣️ Lotte van de Venis and Lori Renna Linton,
Radboud University Medical Center, Nijmegen, The Netherlands, and Euro-HSP

Sign up to our free educational webinar 👉 https://t1p.de/h5xgf

07/09/2026

It is still possible to sign up for our upcoming webinar:
💻 Upcoming joint with ERN EURO-NMD and the Academy of Neurology
📚 Social and life style issues related to ataxias and HSP
📅 08 September, 3-4pm CET
🗣️ Lotte van de Venis and Lori Renna Linton,
Radboud University Medical Center, Nijmegen, The Netherlands, and Euro-HSP

Sign up to our free educational webinar 👉 https://t1p.de/h5xgf

Adresse

University Hospital Tübingen Institute Of Medical Genetics And Applied Genomics CalwerStr. 7
Tübingen
72076

Webseite

http://www.ern-rnd.eu/, https://bsky.app/profile/ern-rnd.bsky.social, https://www.youtube.com/@ern-rnd4467, https://www.

Benachrichtigungen

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