Ern-Rnd European Reference Network for Rare Neurological Diseases

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Ern-Rnd European Reference Network for Rare Neurological Diseases

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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.

10/10/2026

After three eventful and inspiring days our annual meeting in Rome has come to an end. A big thank you to the team from Ospedale Pediatrico Bambino Gesù for having us here this year. We would also like to thank everyone who joined us, both on-site and online, for valuable insights and engaging discussions. Your contributions made this meeting truly meaningful and inspiring.

We leave Rome with new perspectives, fresh ideas, and renewed motivation to continue working together towards our shared goals.

10/10/2026

Join our last talk by Ralf Reilmann on Natural History Studies as historical control data for trials: https://us02web.zoom.us/webinar/register/WN_m-8eQwGwTge3kXUTOtAzUg #/registration

10/10/2026

Don't miss our talk on registry qualification and regulatory expectations for rare disease evidence generation by Kelly Plueschke at 11:45 CEST: https://us02web.zoom.us/webinar/register/WN_m-8eQwGwTge3kXUTOtAzUg #/registration

10/10/2026

This was our panel discussion on registries with Thomas Klockgether Universitätsklinikum Bonn Neurologische Klinik, Rebecca Schüle, David Bendetowicz, Nicole Wolf and Dario Ortigoza. We will be back after a short break at 11:45 CEST with our last session on Regulatory and Methodological Perspectives. Join us online: https://us02web.zoom.us/webinar/register/WN_m-8eQwGwTge3kXUTOtAzUg #/registration

10/10/2026

Join our next talk by Dario Ortigoza on the NKX2-1 registry now: https://www.ern-rnd.eu/scientific-symposium-resgistries-for-rnd/ It starts at 10:30 CEST

10/10/2026

Our second session will present examples of ERN-RND registries, starting with Rebecca Schüle and TreatHSP. Join this talk now: https://www.ern-rnd.eu/scientific-symposium-resgistries-for-rnd/

10/10/2026

This was the first session of our symposium on the Framework for RND registries. After a short break we will be back at 09:50 CEST. Join us remotely: https://www.ern-rnd.eu/scientific-symposium-resgistries-for-rnd/

10/10/2026

What should registries deliver for patients? Patient advocate Mary Kearney will talk about the patient perspective on registries at 08:55 CEST. Join us now: https://www.ern-rnd.eu/scientific-symposium-resgistries-for-rnd/

10/10/2026

Next one up is Nicole Wolf with a framework for multistakeholder patient registries for RNDs. Join our talk online: https://www.ern-rnd.eu/scientific-symposium-resgistries-for-rnd/

10/10/2026

Why do registries matter for rare neurological diseases? Join our Keynote with Thomas Klockgether at 08:05 CEST now: www.ern-rnd.eu/scientific-symposium-resgistries-for-rnd/

Adresse

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

Website

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

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