They are celebrated for universal coverage, digital innovation and some of the best health outcomes in the world. But a new landmark survey of more than 1,600 patients and carers shows that for people living with rare diseases, the Nordic healthcare model is failing.
Eight in ten respondents said their most basic health needs remain unmet, from access to specialists to long-term treatment plans. The findings expose what advocates call a “patient empowerment gap”, a blind spot in systems that otherwise rank among the world’s best. EU Perspectives spoke with Katri Asikainen, President of HARSO talking on behalf of SBONN (the Nordic network for people living with rare diseases) and Stephanie Juran, Project manager at Rare Diseases Sweden. Full results were presented on September 17 at the Nordic Rare Disease Summit in Copenhagen.
Rare diseases and empowerment
What drove you to launch this survey?
Stephanie Juran: We’d long seen similar challenges across our countries, but we never had the data to prove it. Nationally, there were attempts, but resources were limited. This survey finally gave us the chance to collect evidence on a large scale. We also wanted to challenge how “patient empowerment” is understood. In Sweden, for instance, it often means educating patients to take care of themselves outside the healthcare system. For rare diseases, it’s different. Patients often know more than their doctors, simply because there are over 8,000 rare diseases and no clinician can master them all. Empowerment here means recognising that patient expertise and addressing the unmet needs that health systems don’t cover.
Katri Asikainen: Rare unites us. No matter the diagnosis, patients face the same problems. And because the Nordics share similar healthcare and welfare models, these issues play out in very similar ways. In Finland, for example, rare diseases are poorly recognised as a cause for disability pensions in legislation. That creates real financial insecurity for patients. Seeing that it’s the same across the region gives us a stronger voice with governments: it’s not just a national problem, it’s systemic.
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A natural choice
Why focus only on the Nordic countries?
Katri: The Nordic countries have a long history of cooperation, not just in health but in many areas. Our umbrella organisations have been working together for more than a decade, and we already have regional structures like the Nordic Council of Ministers. We also collaborate on joint medicine negotiations. This makes the region cohesive enough to pilot new approaches, while still diverse enough to show differences.
Stephanie: At the European level, EURORDIS has carried out surveys, but not one focused on empowerment. What we did was unique: we asked patients what their needs are in six different areas, and then whether those needs are being met. That simple method allowed us to identify empowerment gaps with precision. It’s a new evidence base that we can take to policymakers.
If the gaps are this large in the Nordics, they are likely even bigger elsewhere in Europe. – Katri Asikainen, President of HARSO
Can the Nordics serve as a model for Europe?
Katri: Yes. The Nordics are often the tip of the spear when it comes to healthcare innovation, from advanced data registries to digital health. We have high literacy, strong research infrastructure and well-established networks. But even here, rare disease patients remain underserved. That paradox makes us a good test case. If the gaps are this large in the Nordics, they are likely even bigger elsewhere in Europe.
At the same time, political will is uneven. Election cycles shift priorities every few years, and rare diseases don’t always stay on the agenda. What we need is long-term planning and dedicated funding. Rare disease patients are an “expensive bunch,” but that cost could be reduced with better coordination and collaboration.
What they didn’t see coming
What were the most striking findings?
Stephanie: Three areas stood out. First, basic healthcare needs: 70 per cent of respondents said access to treatment and someone who listens is essential. Yet 80 per cent said those needs aren’t met. That’s shocking, even if we expected the trend.
Second, expertise and information: 75 per cent stressed the need to find an expert who knows their rare disease, but half said this was unmet. Patients don’t want to be left educating their own doctors.
Third, support and belonging: patients want long-term treatment plans and to feel they have the same rights as anyone else. Again, half said those needs aren’t met.
Katri: Financial insecurity was another major issue, especially in Finland. Around a third of patients reported unmet needs for financial support. Many are denied disability benefits because doctors don’t know how to fill in the paperwork. Sometimes patients are even rejected by specialists because there’s no direct treatment available. That leaves them completely alone. Diagnosis is only the beginning, the real unmet needs come afterwards.
We also saw strong calls for psychological support. Forty-one per cent said their need for professional mental health care was unmet. Living with a rare disease is not just about medical care; it’s about having the resilience and support to cope with everyday life.
Now we can show exactly where the gaps are, and argue for targeted action. – Stephanie Juran, Project manager at Rare Diseases Sweden
Next steps
How will you use the results?
Katri: The survey builds on the Nordic Rare Disease Roadmap we developed after the last summit. One of the key recommendations was to create structures where patients can actively shape healthcare. These findings give us the data to push for that.
We’ll use the results nationally but also compare across borders to learn from each other. Denmark, for example, showed strong gaps in psychological support, while Sweden prioritised better collaboration among professionals. By comparing these variations, we can identify solutions and apply them region-wide.
Stephanie: It’s also about visibility. In a data-driven world, policymakers respond to numbers. Now we can show exactly where the gaps are, and argue for targeted action.
EU-level impact
Could this help make the case for an EU rare disease plan?
Stephanie: Absolutely. National strategies often follow EU-level decisions. The first EU resolution 15 years ago led to the creation of rare disease units in Finland, for instance. But so far the focus has been on infrastructure, not patients.
Katri: Rare disease patients are costly, in Finland, 8 per cent of patients use nearly 20 per cent of specialised healthcare resources. But much of that cost could be reduced through better planning and coordination. With this survey, we now have data to show where the gaps are. Europe can’t ignore it.
Every delay in access to treatment means years of pain and disability. EU presidencies that highlight rare diseases give us hope that governments are starting to take notice. But hope is not enough, we need commitment, speed and resources.
What message do you most want policymakers to take away?
Stephanie: That empowerment isn’t a slogan. For rare disease patients, unmet needs mean real suffering, pain, disability, isolation. With political will and investment, those burdens could be reduced.
Katri: And that patient voices must be at the centre. The more we are heard, the clearer it becomes that this is about real lives, not abstract numbers. We now have the data to prove it, and it’s time to act.
