Share4Rare toolkit for patient advocacy


Introduction to the toolkit


Who should use this toolkit?

This toolkit is for anyone who wants to make a difference in his or her rare disease. Patient advocacy is a constantly evolving field that benefits greatly from new ideas as well as diverse sets of knowledge and expertise.

This toolkit aims to help you to get started in patient advocacy, to serve as a repository to go back to and has the ambition to provide new material even for experienced advocates.

Who wrote this toolkit?

The first version of the Toolkit was written of the patient advocacy expert partners of the Share4Rare consortium in 2019. We hope that many of you will be inspired to contribute to future versions!

What do we hope this toolkit will achieve?

Many rare disease patients have no time to lose and successful advocacy draws on expertise from many different fields. Given the right tools, anyone can progress faster- and make a difference to patients.

Last modified
19 December 2022