Towards More Equitable and Patient-Centred ADPKD Care Across Europe
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PKD International recently contributed to a high-level webinar on rare kidney diseases organised by the European Kidney Health Alliance (EKHA) and ERKNet.
PKD International recently contributed to a high-level webinar on rare kidney diseases organised by the European Kidney Health Alliance (EKHA) and ERKNet, bringing the patient perspective to an important European discussion on how to improve access, equity and standards of care for people living with rare kidney diseases.
Representing PKD International, President Flavia Galletti joined fellow ePAG Lead Susana Carvajal Arjona, President of FEDERG, to bring the experiences and priorities of patients and families into the discussion and highlight the importance of ensuring that their voices remain central to the development of healthcare policies, research and models of care.
During her intervention, Flavia focused on the inequalities that people living with autosomal dominant polycystic kidney disease (ADPKD) continue to experience across Europe, as well as on the opportunities offered by European collaboration, integrated care pathways and meaningful patient involvement.
The webinar brought together patient representatives, healthcare professionals, researchers, policymakers and other European stakeholders to discuss the challenges that continue to affect people living with rare kidney diseases and the actions needed to improve diagnosis, access to expertise, research, innovation and equitable care across Europe.
The full webinar recording is now available and can be watched here.
Significant inequalities remain in ADPKD care
Although ADPKD is present across all European countries and is a relatively well-recognised condition, people living with the disease continue to face substantial inequalities in access to care.
ADPKD is a progressive condition, and the majority of patients will eventually develop kidney failure. Kidney transplantation is generally the preferred kidney replacement therapy for people with ADPKD, yet access varies dramatically across Europe. Waiting times can range from approximately two years in some countries to more than ten years in others.
As a result, many patients spend several years on dialysis while waiting for a suitable organ, and some sadly die before transplantation becomes available. These differences demonstrate how outcomes can still be influenced by geography rather than clinical need.
Unequal access to specialist and multidisciplinary care
Access to specialist expertise also varies considerably, both between and within European countries. Patients may have very different experiences depending on where they live.
Those who can access expert centres are more likely to benefit from specialised, coordinated and multidisciplinary care. By contrast, people living in rural, remote or underserved areas may face additional barriers to accessing appropriate expertise and receiving timely support.
These disparities highlight the importance of strengthening centres of expertise and developing integrated care pathways that can support more consistent standards of care, improve coordination between healthcare professionals and ensure that specialist knowledge reaches patients regardless of where they live.
Innovation should be accessible to all patients
Inequalities are also evident in access to innovation and treatment.
Currently, only one disease-modifying therapy is approved for ADPKD. However, access, eligibility criteria and reimbursement policies differ widely across Europe. Consequently, patients living with the same condition and with similar clinical needs may have very different treatment opportunities simply because of their country or region of residence.
Scientific progress can achieve its full impact only when innovation is translated into meaningful and equitable access for patients.
Early diagnosis, genetic testing and family planning
Significant differences also remain in access to early diagnosis, genetic testing, genetic counselling and family-planning services.
ADPKD is inherited in an autosomal dominant pattern, meaning that each child of an affected parent has a 50% chance of inheriting the genetic variant associated with the disease. Access to reliable information, appropriate counselling and informed reproductive choices is therefore particularly important for individuals and families affected by ADPKD.
These services should not be considered optional. They are an essential component of comprehensive ADPKD care and should be recognised as a healthcare priority.
From European guidelines to practical implementation
Despite these challenges, there are important reasons for optimism.
In 2025, KDIGO published the first comprehensive international clinical practice guideline dedicated to the evaluation, management and treatment of ADPKD. Developed through a multidisciplinary process with strong patient involvement, the guideline provides a shared, evidence-based framework for more consistent and patient-centred care.
Building on this work, ERKNet developed an ADPKD Care Pathway with the active participation of clinicians and patient representatives, including Flavia Galletti and fellow ePAG representative and PKD International Board Member Uwe Korst.
The pathway demonstrates how European collaboration can help translate evidence and clinical recommendations into practical models of care. It aims to promote integrated, equitable and evidence-based care while supporting greater harmonisation of standards across Europe.
The ADPKD Care Pathway will now be piloted through the JARDIN project, providing an important opportunity to assess its implementation in practice, reduce disparities and improve outcomes. It may also provide a model for broader adoption across European healthcare systems.
Patients as partners in shaping better care
Meaningful patient involvement is essential to developing healthcare solutions that respond to the realities of living with ADPKD.
Experience has repeatedly shown that involving patients from the earliest stages of research and policy development helps identify the outcomes that matter most to them, strengthens study design, supports participation and ultimately makes the evidence generated more relevant to real-world needs.
Patients should not be viewed solely as recipients of healthcare, research or policy decisions. Their lived experience and expertise can make an essential contribution to identifying unmet needs, shaping priorities and developing solutions that are both evidence-based and meaningful to the communities they are intended to serve.
The development and implementation of the ADPKD Care Pathway provide an important example of how multidisciplinary collaboration and patient-centred care can move from principle into practice.
By continuing to strengthen collaboration between patients, healthcare professionals, researchers, policymakers and European networks, we can work towards a future in which access to high-quality ADPKD care is determined by patients’ needs rather than by where they live.
PKD International thanks EKHA and ERKNet for creating this important opportunity for dialogue and for ensuring that the voices and experiences of people living with rare kidney diseases remain central to discussions about the future of kidney care.
Watch the webinar and learn more
🔗 Read EKHA’s overview of the webinar and explore the key messages and priorities that emerged from the discussion:
Highlights from the High-Level Rare Kidney Disease Webinar: How Research, Policy and Patient Partnership Can Accelerate Progress Across Europe