🟡 Preliminary Evidence
Patients with rare diseases face catastrophic disruptions to care during public health emergencies, and new analysis from the Lancet eBioMedicine reveals that Europe’s specialised care networks were not adequately prepared for the COVID-19 pandemic or the war in Ukraine. A survey of all 24 European Reference Networks (ERNs)—cross-border collaborative systems designed to coordinate care for rare and complex diseases—conducted between July and September 2025, found significant organisational and logistical vulnerabilities that threaten continuity of care for vulnerable populations.
Key takeaways
- All 24 European Reference Networks were directly affected by COVID-19 and the Ukraine conflict, exposing insufficient crisis contingency planning
- Rare disease patients depend on narrow, specialised treatment pathways and imported medicines that are highly vulnerable to supply chain disruption
- ERNs recommend legal frameworks, pre-positioned emergency protocols, and cross-border coordination mechanisms to mitigate future crises
Crisis Impact on European Rare Disease Networks
Proportion of the 24 ERN coordinators reporting operational disruption, by crisis type (2025 survey)
Source: European Reference Networks Survey, July–September 2025 | Georgian Medical Journal News
Rare disease patients left unprotected during emergencies
Patients with rare diseases rely on highly specialised treatment protocols, many available only through specific ERN centres, and depend on imported medicines that are often sourced from limited suppliers. The Lancet eBioMedicine survey of all 24 ERN coordinators found that COVID-19 lockdowns and movement restrictions interrupted both in-person care and cross-border patient transfers, while the Ukraine war disrupted pharmaceutical supply chains for treatments manufactured in or transiting through affected regions.
These disruptions were not isolated incidents but revealed systemic unpreparedness. The survey, which collected responses from all 24 ERN coordinators representing networks covering rare cancers, genetic disorders, immunodeficiencies, and complex surgical conditions, found that most networks lacked pre-existing protocols for maintaining care continuity during crises. This gap is particularly dangerous because patients with rare diseases typically cannot simply switch to alternative treatment centres or medications without risking disease progression or adverse outcomes.
Systemic vulnerabilities demand legal and operational reform
The ERN coordinators identified multiple structural barriers to crisis resilience, according to the Lancet eBioMedicine analysis. These include absence of legal frameworks enabling rapid cross-border care delivery when borders close, lack of pre-positioned emergency drug stockpiles, insufficient digital infrastructure for remote consultations, and limited coordination mechanisms between national health authorities and ERN centres during public health emergencies.
The networks recommend that European Union and national governments establish mandatory crisis preparedness standards for rare disease services, including designation of essential ERN activities that must continue during emergencies, pre-negotiated access agreements for cross-border patient transfers, and creation of emergency pharmaceutical reserves for critical rare disease treatments. These measures could prevent the therapeutic abandonment that some rare disease patients experienced during COVID-19 lockdowns and war-related supply disruptions.
All 24 European Reference Networks were operationally disrupted by COVID-19; 42% reported direct impacts from the Ukraine conflict. Fewer than 1 in 4 had formal emergency protocols in place before the crises occurred.
— European Reference Networks Survey (Lancet eBioMedicine, 2025)
Building resilience through cross-border coordination
The survey findings underscore that rare disease preparedness cannot be solved by individual ERNs or national health systems acting in isolation. The Lancet eBioMedicine report calls for establishment of a European-level coordination mechanism—potentially housed within EU health institutions—to harmonise crisis protocols across all ERNs, share emergency response best practices, and maintain patient registries that enable rapid identification and relocation of patients when services are disrupted. Such coordination would also facilitate mutual aid agreements between ERNs in stable regions to absorb patients from affected networks during crises.
The urgency is clear: with geopolitical instability, climate-related disasters, and pandemic risk all increasing, rare disease populations cannot remain dependent on fragile, uncoordinated care systems. The lessons from COVID-19 and Ukraine provide a roadmap, but implementation requires political commitment and sustained funding from governments and EU institutions.
What this means
Frequently asked questions
What are European Reference Networks?
European Reference Networks are voluntary collaborations of healthcare providers across EU member states established in 2017 to coordinate diagnosis, treatment, and research for rare and complex diseases. There are currently 24 ERNs covering specialities including rare cancers, genetic disorders, immunodeficiencies, and complex organ disorders.
Why are rare disease patients particularly vulnerable during emergencies?
Rare disease patients often depend on highly specialised treatments available only at designated centres, rely on imported medicines with limited suppliers, and cannot easily switch to alternative therapies without risking health deterioration. When emergencies disrupt travel, supply chains, or centre operations, these patients face immediate access gaps.
What specific changes are the ERNs recommending?
According to the Lancet eBioMedicine survey, ERN coordinators recommend: legal frameworks designating rare disease services as essential during crises, pre-positioned emergency drug stockpiles, digital infrastructure for remote consultation, cross-border care agreements, and EU-level coordination mechanisms to harmonise crisis response across all networks.
The 2025 survey marks the first systematic assessment of ERN crisis readiness and provides a foundation for policy reform. As rare disease communities await government and EU responses, the interim period offers clinicians and centre directors an opportunity to develop internal protocols, test digital communication systems, and establish mutual aid agreements with partner networks across borders. The window to implement these protections before the next major crisis is narrow—and rare disease patients cannot afford to wait.
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