Ern-Rnd European Reference Network for Rare Neurological Diseases

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

18/05/2026

"When I was 15 years old, I remember my father had started to act strangely. He was very apathetic, had mood swifts, was aggressive and had many obsessions." This is what our patient advocate Ruth Blanco Peralta recalls when she looks back on the time when the first symptoms of Huntington's disease appeared—though at the time, no one realized they were related to the disease.”

Having a document like our hashtag for hashtag would have been a great support back then - and is still today. Find our patient journey in many different languages here: https://www.ern-rnd.eu/disease-knowledge-hub/ern-rnd-patient-journeys/ -HD

https://youtu.be/xL0YjyyNGfs?si=tcuRfw83FXzS8DvL

Watch the video in English: https://youtu.be/AZH-yeRfCdY?si=cEtba15nekKwyb2J
European Huntington Association Huntington's Australia Huntingtono ligos asociacija Huntington's Disease Association of Ireland Българска Хънтингтън Асоциация - Bulgarian Huntington Association Astri Arnesen ACHE Corea Huntington Española

The Patient Journey for Huntington's Disease is available in many European languages: https://www.ern-rnd.eu/disease-knowledge-hub/ern-rnd-patient-journeys/...

13/05/2026

This year, the European Academy of Neurology’s Congress will open with a true scientific highlight: the Brain Prize Lecture by Professor Frank Winkler, joint winner of the Brain Prize 2025.

In his lecture, “Neural influences on brain tumor growth and therapy resistance”, Professor Winkler will showcase groundbreaking insights from the rapidly advancing field of cancer neuroscience, illustrating how neural networks actively shape brain tumour initiation, growth, spread and treatment resistance.

Taking place during the Opening Session on Saturday, 27 June 2026 (19:00–20:00 CEST), this lecture sets the tone for what promises to be an outstanding EAN Congress 2026 in Geneva—bringing together cutting‑edge science, clinical excellence, and the global neurology community.

👉 Visit the official website of the European Academy of Neurology for more information on the full programme and how to register.

www.ean.org/congress2026

European Academy of Neurology

12/05/2026

Our coordinator Holm Graessner will introduce our new Postgraduate Curriculum at this year’s EAN Congress. Don’t miss it and join us on Sunday, June 28 at 10:35 CEST (Scientific Theatre)!

Holm Graessner:
Advancing Care for Patients with Rare Neurological Diseases –
the Development of a Postgraduate Curriculum
European Academy of Neurology

12/05/2026

12/05/2026

Got an abstract for significant recent work that is ready to be revealed at ?

You still have time to submit it as a late breaking abstract if it fits the following criteria:

➡️ Has not been published elsewhere prior to the opening day of the congress
➡️ Is of significant interest to the general neurologist
➡️ Will have an important impact on clinical practice or represents an important scientific discovery

Submissions will be reviewed by the Programme Committee based on quality and novelty of content.

For guidelines and submission info, click below.

🔗 https://www.ean.org/congress2026/abstracts/public-submission/public-submission-instructions

12/05/2026

"When I was 15 years old, I remember my father had started to act strangely. He was very apathetic, had mood swifts, was aggressive and had many obsessions." This is what our patient advocate Ruth Blanco recalls when she looks back on the time when the first symptoms of Huntington's disease appeared—though at the time, no one realized they were related to the disease.”

Having a document like our for would have been a great support back then - and is still today. Find our patient journey in many different languages here: https://www.ern-rnd.eu/disease-knowledge-hub/ern-rnd-patient-journeys/ -HD

https://www.youtube.com/watch?v=AZH-yeRfCdY

This video is also available in Spanish: https://youtu.be/xL0YjyyNGfs

European Huntington Association Huntingtono ligos asociacija Huntington's Australia Huntington's Disease Association of Ireland Българска Хънтингтън Асоциация - Bulgarian Huntington Association Astri Arnesen John Gerbild

The Patient Journey for Huntington's Disease is available in many European languages: https://www.ern-rnd.eu/disease-knowledge-hub/ern-rnd-patient-journeys/...

12/05/2026

12/05/2026

Get the latest news on rare neurological diseases with our monthly : https://www.ern-rnd.eu/?mailpoet_router&endpoint=view_in_browser&action=view&data=WzEyNywiMjFiOWY2ZWFiOWJlIiw2LCJmMmI1NGEiLDEwNywxXQ

Find news on , , , , , , and

12/05/2026

At the upcoming , in Malmö, Sweden on Saturday, May 30, Prof Dr Marina de Koning-Tijssen, Head of the Movement Disorders Expertise Centre, Dep. of Neurology, University Groningen, the Netherlands, will share an update on dystonia with a special focus on myoclonus-dystonia. Myoclonus-dystonia is a specific form of dystonia in which people experience sudden, brief muscle jerks (myoclonus), often together with milder dystonia. Symptoms usually start in childhood or adolescence and may improve temporarily with alcohol. In many cases, myoclonus-dystonia is linked to changes in a gene called SGCE, which means other family members may also be affected.

👉️ To attend the event and learn more, register here: https://lnkd.in/dKDgw4pY