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 commen

ts, hints and questions and hope for a good exchange around the topic of rare neurological diseases in Europe.

12/06/2026

💻 Upcoming joint with ERN EURO-NMD and the Academy of Neurology
📚 Friedreich Ataxia
📅 30 June, 3-4pm CET
🗣️ Univ.-Prof. Dr. med. Kathrin Reetz
Klinik für Neurologie, RWTH Aachen Universität

Sign up to our free educational webinar 👉
https://t1p.de/faod2

10/06/2026

💻 Upcoming joint with ERN EURO-NMD and the Academy of Neurology
📚Neuro-opthalmological presentations of ataxia and other rare neurological disorders
📅 16 June, 3-4pm CET
🗣️ PD Dr. Tatiana Brémovà-Ertl, PhD
Klinik für Neurologie und Zentrum für Seltene Krankheiten
Universitätsspital Inselspital Bern

Sign up to our free educational webinar 👉
https://t1p.de/i466o

10/06/2026

Not able to join in person? We’ve got you covered! 💻

The European Society of Human Genetics Conference (June 13–16, 2026 in Gothenburg) is a and completely live streamed via a dedicated virtual conference platform.

🌍 Join from anywhere in the world with our online-only registration options

💡 Benefit from attractive rates, including even lower fees for participants from lower income economies

🎥 Access all sessions live – and on demand for up to 6 months after the congress

You’ll still experience the latest scientific insights, expert discussions, and global exchange—right from your screen.

With this hybrid format, ESHG continues its mission to expand access, outreach, and education across the worldwide genetics community.

No matter where you are, the conference comes to you.
Register now and be part of it! https://2026.eshg.org/registration/

ESHG - European Society of Human Genetics

10/06/2026

Understanding epilepsy starts with awareness, open conversations, and knowing how to support those affected.

At Public Brain Health Day 2026, experts, advocates, and patient voices come together to discuss approaches to epilepsy management, the importance of awareness, and ways to build more supportive communities. 💡

Moderated by Silke Biethahn, this session will feature insights from Margitta Seeck and Dominique Meier, alongside testimonials from Nicolas Steiner and Jon Mark Walls, bringing together scientific expertise, lived experience, and public awareness.

📍Join us on Monday, 29 June in Geneva or online and be part of the conversation!

➡️ Register TODAY here: https://buff.ly/nYTV8mE

10/06/2026

What's new in the field of Rare Neurological Diseases, like HuntingtonDisease, , , , and ? Our monthly keeps you up to date with all important news, training for clinicians like free webinars, participation calls to clinical trials or working groups, funding opportunitiesas well as events. find our newsletter here: https://www.ern-rnd.eu/mailpoet-email/c84e93e81387-ern-rnd-newsletter-june-2026/

10/06/2026

Don't forget to join one of our online meetings later this month 💬

Online community meeting
For everyone to attend
Thursday 25th June 11:30-13:00 (UK time - BST)

Specific group meeting
For affected women
Tuesday 30th June 18:00-19:30 (UK time - BST)

If you'd like to join or have any questions, please email [email protected] 📩

See less

08/06/2026

💻 Upcoming joint with ERN EURO-NMD and the Academy of Neurology
📚Palliative care in adult patients with neuromuscular and other rare neurological disorders
📅 23 June, 3-4pm CET
🗣️ Marianne de Visser, Amsterdam University Medical Center, The Netherlands

Sign up to our free educational webinar 👉
https://t1p.de/b35wf

05/06/2026

Yesterday our ePAGs visited our expert center Motol University Hospital in Prague. Our hosts Martin Vyhnalek and Julie Novakova introduced us to the team at Motol as well as patients and patients representatives they work with. We got a great insight into their work and also got to try some excercises for ataxias and Atypical Parkinsonian Syndromes like lax vox and the Mendelsohn maneuver to improve or ease discomfort with swallowing. They also showed us some of their labs where they do assessments for early detection, like eye movement and gait stability. We also enjoyed the traditional sweets, Koláče, with different fruit, nut or seed fillings.

20/05/2026

Dystonia Europe's Spring Newsletter is available to read now!
As usual it is full of news from the last few months as well as some research news.
There is also news of some of our projects and activities, including a training course we ran for physiotherapists in London, European Federation of Neurological Associations (EFNA) meetings, the Associazione Italiana per la Ricerca sulla Distonia - ARD (Italian Dystonia Society) anniversary, Finnish Dystonia Day and in Romania.
Read all this and more at the link below:
https://dystonia-europe.org/wp-content/uploads/2026/05/DE-News-1-Spring-2026.pdf

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.

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