A new interactive resource to empower patients and families

ADPKD Patient Route Map

The ‘ADPKD Patient Route Map’ is an interactive resource to help patients and families affected by ADPKD.

Developed by patients and experts working together, the Route Map explains what ADPKD is and how it affects patients and families. It describes the types of care and support that patients and families affected by ADPKD should expect from a good-quality health service.

Download and save the Route Map PDF to your device. Open with Adobe Acrobat Reader (available here) and view it in ‘Single page’ mode:

Aims of the Route Map:

  • Help patients and carers manage their own health as much as possible
  • Encourage shared decision making about care
  • Provide reliable information about ADPKD
  • Help patient organisations and healthcare policymakers and providers to improve services for people affected by ADPKD.

The principles for the Route Map were published in the EAF Multidisciplinary Position Statement on ADPKD, which is free online here.

The ADPKD Patient Route Map was developed jointly by PKD International and the EAF, an independent, international and multidisciplinary group of expert doctors and patient advocates. The Route Map and the EAF Multidisciplinary Position Statement were funded by Otsuka Pharmaceutical Europe Ltd and Ipsen Farmaceutica BV. However, these publications reflect the opinions of the authors and not necessarily the sponsors.

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