Share4Rare toolkit for patient advocacy


How to use this toolkit?

This toolkit can be used as a template for you to identify your goals, create a strategy and define key messages, identify co-partners and allocate your time effectively. This will assist you to advocate using your time and energy effectively in order to reach the outcomes you aim for.

Photo by Social Cut on Unsplash

This toolkit is created in a modular fashion. Depending on the level of advocacy, you can use the toolkit in various ways by incorporating elements into your practice or work environment. It provides many practical and workable suggestions for developing short and long-term activities to advocacy. You can use the tools and templates in the toolkit to define opportunities and manage risk, optimizing your path to successful advocacy.

Please contact us at to share your success stories.

We hope this toolkit will contribute to a better sense of understanding of what advocacy is and how it can be used to advance research in rare diseases.

Last modified
28 January 2021