Share4Rare toolkit for patient advocacy


Build a strategy

This toolkit contains the necessary information for you to set up a template of your strategy and build on it. You should start with brainstorming some ideas of what it is you want to do, how to achieve this and how to measure your progress.

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Refer to section Advocacy essentials for the basics of getting started, and use the Advocacy resources provided at the end of the material to lay out your initial ideas.

Work together

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If you are advocating in a group, get together to discuss your initial ideas and approach. This will also help you get a grasp of the strengths, weaknesses and knowledge base that you have to work with and what you need to build on.

Plan your time

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You don’t have to do everything in one session. Each advocate will find their own speed and rhythm for how to do things. This can range from diving head-first into all the information available to revisiting your research and other activities as your time permits. Keep a flexible outlook and be ready for challenges which might alter how you first approached your advocacy.

See section Patient advocacy strategy for advice and ideas on how to structure your activities and budget your time and energy.

Internal communication

Great brands are built from the inside out. People involved in your team are better motivated and thus perform better when they feel connected to the organization. Having strong internal communication is essential to achieve this. Everyone wants to understand the short and long-term goals and the strategy to get there, and be confident about the value that they add towards reaching this goal.

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Factors that make strong internal communication:

  • Make sure colleagues hear important news from you instead of from an external source.
  • Empower teams to manage and be responsible for their tasks.
  • Walk the talk: keep your promise and manage expectations.
  • When times are bad, keep your ties closely with the team.
  • Create and maintain a healthy work environment by being open in your communication and listening to your team to avoid high turnover rates.
  • Be transparent in what you do, and investigate and address rumours quickly.
Last modified
28 January 2021