Patient Advocacy Toolkit

An advocacy tool for patients to help raise awareness about rare cancers

This rare cancer patient toolkit section has been put together to help rare cancer patient groups speak up about what their special needs are and to raise awareness about rare cancers. It has been written by Rare Cancers Europe representatives from patient groups, doctors, European Affairs specialists and a health journalist, who all have first-hand experience of the challenges faced by those diagnosed with a rare cancer.

Who this tool kit is for?

• Rare cancer patient groups

How/when to use it?

• When preparing to raise awareness of patients’ needs
• When speaking to authorities or the public, in order to make rare cancer patients’ lives better
• When areas for change have been identified

Chapters included

• Why Speak Up?
• Key Messages
• How To Say It
• Practical Presentation Tools
• Following Up
• Press Kit
• Social Media
• Defining A Project

Download the complete Rare Cancers Europe Patient Advocacy Toolkit