Advocacy Toolkit

Retina International is delighted to present our Advocacy Toolkit; a comprehensive resource that has been designed to provide a framework for creating and implementing advocacy strategies – from picking your particular battle, gathering & generating the information (data) to support it, to deciding on the most effective lobbying avenues available to you.

Retina International strives to enable the community it serves to bring about positive change by thinking globally, and acting locally. Advocacy, or lobbying as it is referred to in some regions, can be daunting and may often seem like a complicated and exclusive process. This toolkit was created to support you, our members, in developing practical, structured advocacy strategies that empower you to be active and involved agents of policy change.

The Retina community is diverse; as are the issues it tackles. As such, the framework described in this toolkit may be applied to many different kinds of advocacy, including research, access to therapies, supports, and more.


When it comes to advocacy, our overarching goal is to move a public health issue specific to our patient community – be it access to genetic testing, therapies, or reimbursement – onto the policy agenda and through the policy-making process. To do this effectively, your organisation will need to develop and implement an advocacy strategy.

A practical framework to creating this strategy is outlined fully in our toolkit, and can be thought of as a cycle, with the steps as follows:

  1. Pick your battle
  2. Do your research
  3. Map your stakeholders
  4. Create a plan
  5. Time to Act
  6. Monitor & Evaluate


A circular diagram depicting a cycical process with the following steps: 1.Pick your battle 2.Do your research 3.Map your stakeholders 4.Create a plan 5.Time to Act 6.Monitor & Evaluate
Constructing your Advocacy Strategy - A Cyclical Approach

We at RI will continually add to this resource to ensure it is up to date and useful for you.

We are, as always, keen to hear your thoughts and suggestions. If you wish to add to this resource, for example, by including an experience from your local community that might benefit your peers, please do contact our colleague Fiona Waters at



Share4Rare Toolkit

The Good Lobby EU Advocacy Toolkit

Rare 2030: Meeting your MEP

Evidence for Advocacy: A Practical Guide – Health Research Charities Ireland

Advocacy Action Guide: A Toolkit for Strategic Policy Advocacy Campaigns – Bloomberg Advocacy Incubator (BAI) at Campaign for Tobacco-Free Kids

ARVO Advocacy Toolkits

Seeds For Change: Building Consensus

What Makes an Effective Coalition? TCC Group, 2011


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