PKD International and the European ADPKD Forum (EAF) launched the first ADPKD Patient Route Map at the ERA-EDTA 2018 Congress.
The Route Map is an interactive resource designed to help educate and empower people affected by autosomal dominant polycystic kidney disease (ADPKD). It explains the types of care and support that patients and families should expect from their health service. The aim is to help patients and carers to manage their own health with their healthcare team, to talk about ADPKD with their nephrologist, to participate in making decisions about their own care, and to make the best use of available care and support services.
The idea for the Route Map came from an EAF Round Table meeting involving patients and representatives from various European-level societies of medical specialists involved in ADPKD care and kidney patient organisations, in January 2016.
