A new interactive resource to empower patients and families

ADPKD Patient Route Map

PKD International has collaborated with the European ADPKD Forum (EAF) to create the first ever ‘ADPKD Patient Route Map’ – 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 should expect from a good-quality health service.

The Route Map is best viewed using the Adobe Acrobat Reader (available here). Download the PDF and save it to your device, open it with the Reader and view it in ‘Single page’ mode for best results.

Watch a video below introducing the Route Map.

The aim of the Route Map is to help patients and carers to:

  • Manage their own health as much as possible
  • Talk about ADPKD with their healthcare team and to participate in making decisions about their own care, when required
  • Make the best use of available services so that everyone affected by ADPKD gets the care, support and information they need, at the right time. 

The Route Map can also help patient organisations and healthcare policymakers and providers to improve services for people affected by ADPKD.

The Route Map explores how ADPKD is diagnosed, investigated and managed at each stage during the lifelong patient care pathway. It also provides advice on issues such as genetics, family planning, emotional wellbeing and finances. The Route Map is based on the latest scientific knowledge about ADPKD and insights from experts and patients from across Europe. The principles for the Route Map were published in the EAF Multidisciplinary Position Statement on ADPKD, which is free online here.

The Route Map isn’t just a book – it is an interactive, user-friendly PDF with clickable hyperlinks and a navigation bar to allow you to move around the Route Map. There are ‘pop-ups’ that give further information on particular topics and messages from other people affected by ADPKD across Europe, and links to other websites and sources of information. Checklists are also provided to help patients and families get the most out of consultations, and healthcare teams ensure that patients are always at the centre of their care pathway. Finally, there is a list of patient organisations – a vital source of information and support for everyone affected by ADPKD. To work properly, the Route Map must to be opened using the Adobe Acrobat Reader.

Knowledge is power – and we hope the ADPKD Patient Route Map helps to empower everyone affected by ADPKD, allowing them to cope better with the disease and to get the care and support they need.

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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.