Ern-Rnd European Reference Network for Rare Neurological Diseases

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

10/02/2026

⏰ Poster Abstract submissions for close on 6 March -don’t miss the opportunity to share your work!

If your work has insights that others could learn from, this is an opportunity to share it in a format designed for exchange and visibility. All accepted posters will be showcased in the virtual exhibition, making them accessible to participants throughout the conference and beyond. Posters whose representing author is registered to attend the conference in person will also be displayed on a board at the event’s venue in Prague.

Authors of top-scoring posters will be invited to take part in a Poster Pitch Session at ECRD. Poster Pitches are where emerging ideas, practical experiences, and new approaches often find their first audience - and where conversations begin that can shape future collaboration across the rare disease ecosystem.

🎟️ Representing authors of accepted posters will also receive an exclusive 20% registration discount!

👉 Submit your Poster Pitch now: https://go.eurordis.org/ecrd-posters-2026

06/02/2026

03/02/2026

🧠 Myoclonus Dystonia often begins in childhood, yet it’s frequently mistaken for more common conditions like cerebral palsy. This misdiagnosis can delay accurate answers and effective care for years.

To change this, a study across ERN-RND centers throughout Europe was conducted to raise awareness, strengthen genetic diagnosis, and better understand how this condition is currently managed.

✨ The results now lay the groundwork for clinical treatment guidelines for Myoclonus Dystonia.

👉 Learn more about the condition and available treatment options in our video interview with ERN-RND member Belén Dueñas Pérez.

Publication:
Approach to Myoclonus Dystonia Syndrome: A European Reference Network Survey
https://pubmed.ncbi.nlm.nih.gov/40088059/

https://youtu.be/HgpHRkNAwaQ

Myoclonus Dystonia often begins in childhood, yet it is frequently mistaken for more common conditions such as cerebral palsy — delaying accurate diagnosis a...

03/02/2026

For many people living with a rare disease, the path to a diagnosis is still long and uncertain - and delays can mean missed opportunities for care, support, and treatment. ⏳

At , the Diagnosis, Research and Prevention track will spotlight how earlier detection can be improved through newborn screening and other approaches, while addressing key questions around feasibility, cost and equity.

Discussions will also explore the journey from rare disease diagnosis to treatment, and how research and health systems can work together to reduce diagnostic delays and improve patient outcomes.

Do not miss this opportunity to help advance solutions that strengthen early detection, support equitable access, and improve the rare disease journey for patients and families across Europe!

👉 Register & learn more: https://go.eurordis.org/register-in

03/02/2026

Are you a working on ?
Apply now for the David Marsden Award 2026, and your opportunity to win €10,000 towards your research!

The award was introduced by Dystonia Europe in 2003 and is presented every year to stimulate research on dystonia, especially by young scientists in Europe. Professor David Marsden (1938 – 1998) was one of the leading neurologists in Europe and we wish to honour the enormous part he played in developing knowledge of and interest in dystonia.
Learn more and apply here: https://davidmarsdenaward.org

Ern-Rnd European Reference Network for Rare Neurological Diseases Resident and Research Fellow Section of European Academy of Neurology European Academy of Neurology World Federation of Neurology - WFN World Federation of Pediatric Neurology International Parkinson and Movement Disorder Society

03/02/2026

💻 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

14/01/2026

Once again this year, the European Conference on Rare Diseases & Orphan Products (ECRD) offers researchers, patient representatives, clinicians, and policymakers the opportunity to present their work through a poster showcase.

There is still time to submit your work and contribute to the dialogue at one of Europe’s leading rare disease events.

🖼️ Accepted posters will be displayed in the virtual exhibition.

🎟️ Representing authors of accepted posters will also receive an exclusive 20% discount code for ECRD 2026 registration.

📮 Learn more about requirements and how to submit: https://go.eurordis.org/ecrd-posters-2026

14/01/2026

We are honoured to present this year’s Black Pearl Holistic Care Award to the Bulgarian Huntington Association's Support Centre for Families with Rare Diagnoses in Sofia, recognising its exemplary commitment to integrated, person-centred support for individuals and families impacted by rare diseases. 🫂 Българска Хънтингтън Асоциация - Bulgarian Huntington Association

Since its establishment in 2015, the Support Centre has been a pioneer in delivering truly holistic care—addressing psychological, educational, and social needs in a cohesive and compassionate way. Its multidimensional model promotes independence, resilience, and inclusion, empowering people living with a rare condition, as well as their families, to thrive.

Through a wide range of tailored services—such as psychosocial counselling, rehabilitation therapies, care coordination, and life-skills training—the Centre ensures that support is personalised to each individual’s circumstances and aspirations. Families and caregivers are central to this process, receiving guidance, training, and peer support to strengthen daily care and community participation.

Beyond its direct services, the Centre’s advocacy, awareness work, and community partnerships help build a more inclusive and understanding society for people living with rare conditions. It sets inspiring standards for holistic rare disease care across Europe and beyond!

👉 Discover their work: https://go.eurordis.org/Awardees

13/01/2026

🎙️We are back! As Rare Disease Day 2026 approaches, our Rare on Air Stories bonus series continues with a deeply moving story that shines a light on the strength and love of caregivers.

In this episode, we meet Ken, whose life has been shaped by Huntington’s disease, a full time carer for his mother.

💜 Ken’s reflections offer a powerful reminder that while rare diseases may be uncommon, the love that sustains families through them is not. His story speaks to the courage it takes to hope, the endurance of care, and the beauty of compassion in the rare disease journey.

🎧 Listen to Ken’s story: https://www.eurordis.org/rare-on-air/

13/01/2026

POSTPONED 💻 Upcoming on “Social and Lifestyle Issues Related to Ataxias and Hereditary Spastic Paraplegias”
📅 13th January, NEW DATE: tba
🗣️ Lotte van de Venis, Radboud University Medical Center, Nijmegen and Lori Renna Linton, Euro-HSP

Sign up 👉 https://t1p.de/9efz8

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

12/01/2026

POSTPONED 💻 Upcoming on “Social and Lifestyle Issues related to Ataxias and Hereditary Spastic Paraplegias”
📅 13th January, NEW DATE: tba
🗣️ Lotte van de Venis, Radboud University Medical Center, Nijmegen and Lori Renna Linton, Euro-HSP

Sign up 👉 https://t1p.de/9efz8

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