At the centre of the panel, titled Racing Against Time: Europe’s Rare Kidney Disease Challenge, was new data from Sobi’s Rare Kidney Disease Barometer, which aims to inform policy by highlighting the avoidable human and socio-economic impact of these conditions, if diagnosed earlier.
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“Early diagnosis is critical to alleviate the health, economic, and emotional burden patients and caregivers are experiencing,” said Lydia Abad-Franch, Chief Medical Officer at Sobi.
The cost of late diagnosis
For patients, the consequences of delayed diagnosis are profound.
Daniel Gallego, President of the European Kidney Patients Federation, described being diagnosed at 20 years old, a moment he said split his life in two. Beyond the clinical impact, he pointed to the disruption to work, education and daily life that followed.
The Barometer data reinforces this, showing the impact on families and caregivers, many of whom must adjust their working lives.
Panellists, including Abad-Franch, agreed that part of the problem is structural. While scientific progress in rare kidney diseases has accelerated, health systems have been slower to adapt.
“One third of patients waited more than three years and in some cases patients waited up to five years to be diagnosed,” Abad-Franch said.
When diagnosis comes late, treatment options are often limited. Patients are more likely to require dialysis or transplantation—interventions that carry significant costs for both healthcare systems and patients themselves.
“Patients have to spend three days per week, four hours per session at the dialysis clinic,” Franch continued. “It’s really affecting the whole family, and creating high levels of anxiety, depression and guilt.”
For Gallego, this broader burden needs to be reflected in policy decisions: “It's not only about mortality or survival, it’s also about quality of life.”
Here, he argued for a more holistic approach—one that looks beyond clinical treatment to include quality of life, mental health and support for families.
Screening: simple, available and underused
Earlier intervention could help preserve kidney function and reduce the clinical and socio-economic burden without necessarily requiring complex tools.
Professor Michel Jadoul, Co-President of the European Kidney Health Alliance, pointed to urine testing as a straightforward and inexpensive way to identify early signs of kidney disease.
The issue, Jadoul suggested, is not capability but consistency. “Urine testing is grossly underused… only 50 per cent of people with diabetes have a urine test, despite once-a-year guidelines. We can do better.”
Newer targeted therapies can also delay disease progression, if patients are identified in time. That gap between innovation and access became a central tension in the discussion.
“We have the obligation to ensure that new treatments are made available and that scientific updates are translated into regulatory guidelines,” Abad-Franch said, using the US’s oncology approach as an example.
The case for CRM screening
One proposal gaining traction is a more integrated approach to screening, with an expert taskforce of cardiovascular, kidney, diabetes and obesity organisations providing a blueprint for EU-wide Cardiorenal Metabolic (CRM) health checks.
These checks would combine testing for kidney disease, diabetes and cardiovascular risk into a single, routine assessment—particularly for higher-risk groups.
Such models already exist. Abad-Franch pointed to countries like Japan as proof of concept, where structured health checks have been shown to be both feasible and effective.
At EU level, policymakers are beginning to take note. MEP Nikos Papandreou highlighted the need to embed screening more firmly into health strategies, particularly for at-risk populations who are currently missed.
The challenge is not just designing these systems—but ensuring they reach those most likely to benefit.
Despite urgency, Papandreou stated that the political reality was that conditions affecting smaller populations can be harder to prioritise. However, he also argued that the long-term case is clear: early intervention reduces future costs, while research in rare diseases often delivers broader benefits.
Examples from other countries show that systematic screening is possible, but progress across Europe remains uneven. Differences in healthcare systems, funding priorities and awareness continue to shape outcomes for patients.
Panellists also pointed to the need for closer alignment between regulatory approval and access to treatment, ensuring that new therapies reach patients more quickly.
From debate to action
The gap is not knowledge, but alignment.
Scientific progress, patient experience and policy ambition are increasingly pointing in the same direction: earlier diagnosis, integrated screening and faster access to treatment.
For Sobi, the message is that earlier diagnosis is no longer a distant goal, but an immediate opportunity. As Gallego put it: “In our opinion, the best dialysis is to not need dialysis.”
The tools and data exist. The question is whether healthcare systems can move quickly enough to diagnose and treat patients before it is too late.