A new ‘Viewpoint’ published in The Lancet Regional Health – Europe looks at how the 24 European Reference Networks (ERNs) coped with two major crises since 2017, the COVID-19 pandemic and the war in Ukraine, and what needs to change to prepare for the next one. ERN eUROGEN Coordinator Prof Peter Mulders is among the co-authors, alongside all 24 ERN coordinators and lead authors Hélène Dollfus (ERN-EYE) and Maurizio Scarpa (MetabERN).
The paper draws on a survey of all 24 ERN coordinators, carried out between July and September 2025 as part of the EU-funded Joint Action on Integration of ERNs into National Health Systems (JARDIN). Every coordinator responded, giving a complete picture of how the networks that support an estimated 30 million people living with rare diseases across Europe have handled emergencies so far, and how ready they are for the next one.
A gap between response and readiness
The headline finding is a paradox: ERNs have proven they can respond quickly to a crisis, but few have a plan in place beforehand. Only 2 of the 24 networks had a crisis preparedness plan before COVID-19 arrived, and even now, several years on, 17 of the 24 still lack an effective one. During COVID-19, ERNs pulled together at speed. Coordinators issued joint vaccination guidance, built patient-facing digital resources, and used the European Commission’s Clinical Patient Management System to keep clinical collaboration going across borders.
When Russia invaded Ukraine in 2022, 20 of the 24 networks mobilised within weeks, launching the #ERNcare4Ua campaign, setting up a weekly crisis call with the European Commission and international partners, and helping establish a dedicated rare disease hub at Ohmatdyt Children’s Hospital in Kyiv.
The survey also identified four recurring bottlenecks that hit rare disease patients hardest during any crisis: getting to specialist care, shortages of medicines and devices, staff unavailability, and interruptions to diagnostic services. Over a third of coordinators also flagged climate change, including extreme heat and cold, as an emerging and underrecognised threat to patients whose conditions make them vulnerable to thermoregulatory stress.
Ten recommendations for the future
Based on the findings, the authors set out ten recommendations for a European crisis preparedness plan for rare disease populations. In brief, these call for:
1. Pre-agreed cross-border pathways so patients can reach specialist care at another ERN centre if their own is overwhelmed
2. Stronger remote care options, including teleconsultation and telemedicine, for when physical access isn’t possible
3. Secure cross-border supply chains for medicines, devices and diagnostics
4. Better preparedness support and education for patients
5. Better preparedness training and guidance for healthcare professionals
6. More resilient digital infrastructure, built to withstand outages and cyberattacks
7. Flexible, pre-approved arrangements to keep clinical trials running during a crisis
8. A European network of molecular diagnostic laboratories that can accept samples across borders
9. Extending ERN expertise and support to countries beyond the EU
10. A formal mandate and dedicated funding for ERNs as recognised crisis response hubs, integrated with bodies such as the WHO, the Red Cross and national emergency services
ERN eUROGEN’s own support for Ukraine
The paper’s findings on the Ukraine response reflect work ERN eUROGEN has been doing directly. Since 2022, we have supported both clinicians who remain in Ukraine and patients who have been displaced, helping the former access specialist advice and training and the latter find specialist care in the countries where they now live.
An administrative agreement between the EU and Ukraine allows Ukrainian clinicians to use CPMS, with referrals triaged nationally by the Rare Diseases Hub in Kyiv before they reach our experts. In June 2025, the network held its first successful case discussion for a Ukrainian patient, a nine-year-old girl with spina bifida, referred by a clinician at Khmelnytskyi Children’s Hospital. Since November 2023, we have also run a joint webinar series for Ukrainian clinicians and patients with OMNI-Net Ukraine, IFSBH, ERN ITHACA and ERN ERKNet, with recordings freely available on our YouTube channel. In November 2025, we shared a selection of our guidelines and patient information materials with the Rare Diseases Hub Ukraine, OMNI-Net Ukraine and Khmelnytskyi Children’s Hospital for use by clinical teams and families.
We have also built direct relationships with Ukrainian partners and authorities, including a Memorandum of Understanding with IFSBH and OMNI-Net Ukraine, participation in Rare Disease Day events in Kyiv, and outreach to Ukraine’s national urological societies, alongside our role in the cross-ERN #ERNcare4Ua initiative described in the paper.
➡️ Read more on our Support for Ukraine page
Why this publication matters for ERN eUROGEN
As one of the 24 networks that contributed to this survey, ERN eUROGEN shares the experience and the challenges described in the paper, and the same reliance on specialist expertise, cross-border collaboration and continuity of care that makes rare disease patients vulnerable when systems come under strain. The recommendations offer a useful reference point as we continue to develop our own approach to preparedness within the network.
➡️ Read the full open access article
Reference: Dollfus H, Arzimanoglou A, Evangelista T, Graessner H, Mosca M, Sangiorgi L, Blay JY, Bodemer C, Fenaux P, Hernández F, Jondeau G, Ligtenberg MJL, Lohse AW, Mathijssen IMJ, Mulders P, Pereira AM, Schaefer F, Swart JF, Verloes A, Wagner TOF, Wijnen RMH, Wilde AAM, Pereira MDMM, Ladenstein R, Scarpa M. Crisis readiness for rare disease populations: learnings and recommendations by the European Reference Networks. Lancet Reg Health Eur. 2026 Aug 8;69:101801. doi: 10.1016/j.lanepe.2026.101801. PMID: 42604059; PMCID: PMC13476765.
