Rare but real: New fact sheet highlights the burden of rare kidney diseases
Launched at a high-level policy forum during the 78th World Health Assembly, a new fact sheet from the ISN spotlights the often-overlooked burden of rare kidney diseases (RKDs) and calls for urgent, coordinated action to improve outcomes for those affected and their families. The fact sheet raises awareness and calls for global commitment to equity and inclusion in rare disease care.
Explore the fact sheet on RKDs.
Drawing on two recent scoping reviews published in Kidney International Reports®, the fact sheet exposes the systemic neglect of rare kidney diseases. It highlights research gaps, limited access to diagnostics and treatment, and the wide-reaching social and economic consequences for patients and caregivers. In response, it presents targeted policy recommendations from the ISN Manifesto and the WHO RKD resolution — ranging from investing in context-specific research to building stronger, more inclusive support systems — to improve care and quality of life for those affected.
Read “Scoping review of economic analyses of rare kidney diseases“
Although individually rare, nearly 300 RKDs exist, many of which are genetic and begin in childhood. Together, they represent a significant global health challenge, marked by delayed diagnosis, limited treatment options, high costs, and profound psychosocial impact. Patients and caregivers often face disrupted education or careers, financial hardship, and emotional distress.
To support advocacy, policymaking, and your clinical practice, explore more resources in the ISN Rare Kidney Diseases Toolkit.
The fact sheet is supported by Novartis.
