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Share4Rare Toolkit for Patient Advocacy

Covering domains like communication, fundamental research, investment strategies and legal aspects.
A practical guide to patient advocacy, specifically connected to rare diseases






Share4Rare project.

Suggested skills and knowledge

No previous skills or knowledge. It is meant for anyone who wants to make a difference in his or her rare disease. The first version of the Toolkit was written of the patient advocacy expert partners of the Share4Rare consortium in 2019.


Share4Rare Toolkit for Patient Advocacy

Online tool

Aim of the resource

This toolkit aims to help people 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.

How to use it

This is a useful tool for patients and carers with needs connected to rare diseases. Steps: Read it / Use it or share it

We are here to help you

Browse through the most frequent issues and questions.