ERN-RND | European Reference Network on Rare Neurological Diseases
for rare or low prevalence complex diseases
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
More here.
The European Reference Network (ERN) flagship manuscript has just been published in the Orphanet Journal for Rare Disease. The manuscript provides an overview of what ERNs are, what they deliver and what they aim to become.
Short summary
Although each rare and complex disease affects relatively few people, together they impact an estimated 27–36 million people in the European Union. To address this major public health challenge, the EU established the European Reference Networks (ERNs) in 2017. ERNs connect expert centres across borders to improve and harmonise diagnosis and care for patients with rare and complex diseases. Today, 24 ERNs link 1,606 expert centres in 375 hospitals across all EU Member States and Norway. Their work includes multidisciplinary case discussions, education, guideline development, and patient-centred governance. More than 4,900 highly complex cases have been reviewed without requiring patients to travel abroad, supported by the European Commission’s secure Clinical Patient Management System 2.0. ERNs also proved resilient during the COVID-19 pandemic and the war in Ukraine. A 2023 evaluation found that over 95% of member centres met quality standards. The Joint Action JARDIN (2024–2027) now seeks to embed ERNs into national health systems to ensure sustainable and equitable access to high-quality rare disease care.
The registration for our Spring School “Next Generation Sequencing Diagnostics for Rare Neurological Diseases” taking place on May 5–7 is now open. The event will be held online, and participation is free of charge.
During this Spring School, participants will gain insights into:
Our ePAG Nataliya Grigorova received the Holistic Care Award for her work in the Bulgarian Huntington Association – Congratulations, and keep up the good work!
Learn more about the association here.
Last December’s High Level Meeting on a European Innovation and Care Ecosystem for Rare and Complex Diseases brought together policymakers, researchers, healthcare professionals, industry and the patient advocacy to help shape the future of rare disease policy in Europe.
This collective effort culminated in the Declaration on the EU Innovation and Care Ecosystem for Rare and Complex Diseases—a bold commitment to building a sustainable research and innovation ecosystem, supported by dedicated funding.
We, alongside many other European Reference Networks, have signed this Declaration and will actively work towards advancing its goals within our remit.
Our coordinator Holm Graessner is participating in the Brain Innovation Days’ Platinum Panel “Advancing Adaptive Pathways and Real-World Evidence for Orphan Drugs” on October 15th, 11:55 CEST.
This session will explore how adaptive pathways and Real-World Evidence (RWE), including patient-experienced data, can be more effectively integrated into policy frameworks to improve access to innovative treatments for rare brain disorders. With patients often facing long delays and limited options, there is a growing need to rethink how we evaluate and approve therapies. In partnership with Merck KGaA Healthcare, this session will bring together stakeholders from across the healthcare ecosystem and aims to identify collaborative, patient-centred policy solutions that accelerate access while ensuring long-term sustainability and equity.
Find the whole programme here.
Are you at this year’s EAN Congress in Helsinki? Then come and visit us at our booth (N21) in the Neurohood and have a coffee with us – the ERNs EURO-NMD, epiCARE and EFNA, the European umbrella organisation of neurological patient advocacy groups, will also be there!
Please find below our contributions.
—– SUNDAY 22 June —–
16:25 – 16:55 EEST
ERN-RND: Improving care for rare neurological diseases: The European reference networks
—– MONDAY 23 June —–
16:25 – 16:55 EEST
ERN-RND: Current practices regarding genetic therapies in Europe
What is the use of Patient Registries? And how does data sharing in the ERNs work? Our coordinator Holm Graessner will give an insight on this at the EESC Conference “Towards an EU Action Plan on Rare Diseases” on April 10, 16:30 CEST.
And our patient advocate Lori Renna Linton will talk about Patient Journeys and how to develop one, at 12:00 CEST.
You can now register for online participation here. Find the programme here.
Find the recordings here. Holm Graessner’s talk starts at 7:46:00, Lori Renna Linton’s talk at 2:35:00.
Rare Disease Day is coming up! Join us for shaping the future on policy for Rare Neurological Diseases on February 19, 10-12 CET. Join the meeting with the MEP Interest Group Brain Helath & Neurological Conditions together with our coordinator Holm Graessner as panelist.
Big thanks to the European Federation of Neurological Associations (EFNA) for this invitation! To participate on-site or online please register till February 5: https://www.efna.net/mep-february25/
The European Pediatric Neurology Society (EPNS) and the European Reference Network for Rare Neurological Diseases (ERN-RND) are organizing a Winter School on Challenges of Treating Rare Neurological Diseases.
The school will take place virtually, from 12th to 14th March 2025.
Day 1 Disease Modifying Therapies
Day 2 Movement Disorders
Day 3 Co-morbidities and Cases
Find the programme here.
