Ern-Rnd European Reference Network for Rare Neurological Diseases

28/02/2026

28/02/2026

Hello, I’m Mikko from Finland and I live with .
I hope that people get a diagnosis as soon as possible. Hopefully, in the near future, there will be more information about the etiology of dystonia, and based on this, there will also be new options in the treatment of dystonia.
What can you imagine? Take part in : https://www.rarediseaseday.org/

28/02/2026

On this , EURORDIS stands alongside our members and the other organisations of the Plateforme Maladies Rares, home of our headquarters in Paris, to put equity at the heart of our calls for action! 💜

For years, we have pushed for fairer access to diagnosis, care, treatment and social support across Europe. And we will continue to do so.

Rare Disease Day is not only about awareness - it is about addressing the inequalities people living with a rare disease face every day, and driving change at global, European, and national level.

Because equity is not optional, it is essential.

Get involved now: https://www.rarediseaseday.org/

Alliance Maladies Rares Orphanet

28/02/2026

Today is

Huntington's Disease is a rare neurological disease. Approximately 750 people in Ireland live with Huntington's disease with an estimated 3000+ people living at risk. Family caregivers typically care for more than one family member.

If you know someone living with Huntington's disease please share our poster to increase awareness.


European Huntington Association
Rare Diseases Ireland Neurological Alliance of Ireland (NAI) Ern-Rnd European Reference Network for Rare Neurological Diseases European Federation of Neurological Associations HSE Ireland Roinn Sláinte, Department of Health Neuroscience Ireland Disability Federation of Ireland Royal College of Surgeons in Ireland The Psychological Society of Ireland

28/02/2026

Today is and this year it's all about 💜

Equity means more than awareness — it means real access. But that is often not given. For example, hotel rooms labeled “accessible” often still create barriers for wheelchair users, from tight spaces to unusable bathrooms. Our patient advocate Lori Renna Linton who is a whelchair user herself, often faces problems like that with hotels when she travels.

In this video, you’ll see why true accessibility matters. Equity means removing obstacles so everyone can participate — not just in theory, but in practice.

https://youtube.com/shorts/yle9Rl8-4Jo EURORDIS-Rare Diseases Europe Joint Action EPNS - European Paediatric Neurology Society Dystonia Europe European Huntington Association European Federation of Neurological Associations

Rare Disease Day 2026 is all about Equity 💜Equity means more than awareness — it means real access. For example, hotel rooms labeled “accessible” often stil...

26/02/2026

Something exciting is on the way - stay tuned!

Music (you tube library): Seagull - Telecasted

25/02/2026

FREE upcoming EPNS Webinars!

The EPNS hosts webinars on topics of key interest to Child Neurologists. Each webinar is broadcast live on Zoom for FREE to anyone who would like to register.

Our webinar programme includes many different types of webinars -

Educational Webinars
Journal Club Webinars
Case Discussion Webinars
EEG Club Webinars
Advocacy Training Webinars
Climate Change Webinars

For more information & to register visit - https://www.epns.info/epns-webinars/

25/02/2026

Our ePAGs John Gerbild and Nataliya Grigorova at the EURODIS Black Pearl Awards yesterday evening! Nataliya received the Holistic Care Award for her work in the Българска Хънтингтън Асоциация - Bulgarian Huntington Association - Congratulations, and keep up the good work Nataliya!

Learn more about the association here:
https://www.eurordis.org/black-pearl-awards/awardees/

EURORDIS-Rare Diseases Europe

24/02/2026

💻 Upcoming on “Getting the Most Out of Physiotherapy in Dystonia”
📅 3rd March, 3:00 CET
🗣️Maarten Nijkrake, Radboud University Medical Center, Nijmegen, The Netherlands

Sign up 👉 https://t1p.de/jhk6f

Joint with the European Reference Network for Rare Neuromuscular Diseases and the European Academy of Neurology

18/02/2026

💻 Upcoming on “Palliative care for leukodystrophies and other rare neurological diseases (pediatric focus)”
📅 17th March, 3:00 CET
🗣️Nicole Wolf, Amsterdam University Medical Centers, Netherlands
Sign up 👉 https://t1p.de/y4ii0

Joint with the European Reference Network for Rare Neuromuscular Diseases and the European Academy of Neurology