Electrolyte treatments play a crucial role in managing both hereditary and acquired kidney diseases, including rare disorders. Unlike standard supplementation, these treatments often require higher doses and specialized formulations. However, limited availability, the need for hospital-compounded products, and inconsistent national regulations create significant barriers for patients across Europe. In some countries, electrolyte solutions are labeled as food supplements rather than medicines, resulting in unequal access, poor reimbursement, and additional financial strain for patients and families.
To better understand these challenges, the European Patient Advocacy Group (ePAG) of the ERKNet Tubulopathies Working Group conducted a survey among experts from 15 ERKNet centers across 15 European countries. The study aimed to assess access to electrolyte therapies, identify inequities in reimbursement, and evaluate the availability of suitable formulations for children.
The findings highlight substantial disparities between countries, particularly regarding insurance coverage and the availability of child-friendly products. The report, endorsed by the ERA Working Group Genes & Kidney and the ESPN Working Group on Inherited Kidney Diseases, calls for harmonized regulations and improved access to ensure equitable care for patients with rare kidney diseases throughout Europe.
Congratulations to the ePAG Tubulopathies Working Group and all participating ERKNet centers for this important initiative and for their commitment to improving patient care and equity across Europe.
Reference: Arjona, Susana Carvajal et al. “The unmet need of electrolyte supplements.” Nephrology, dialysis, transplantation : official publication of the European Dialysis and Transplant Association - European Renal Association, gfaf161. 21 Aug. 2025, doi:10.1093/ndt/gfaf161
Watch the video by Susana Carvajal presenting the study here
