Suzie-Ann Bakker
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Share4Rare toolkit for rare advocacy

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Patient advocates deal with giving a voice to a spectrum of healthcare stakeholders, which include patients, survivors of illness and caregivers. An advocate can be shaped as an individual, an organization or both. The target of an advocate’s activity concerns a certain disease or group of diseases and can include all or part of the patient community. Rare disease patients are facing even more challenges in their advocacy due to the limited and fragment patient numbers.

What is in it

This practical kit shares best practices and tools that advocates have used to support innovation and offers practical advice on how to make a difference for rare disease patients. With this toolkit, Share4Rare aims to create a practical resource to help plan, build, test, communicate and launch a new advocacy effort. This extensive toolkit is a result of many years of advocacy experience in the rare disease field of all Share4Rare partners and covers a range of topics such as strategy, communication, research and education to help rare disease families access the services and support they need.

How to use it

The toolkit is divided into different sections: each holding its own introductions and explanation. It can be used as a template to create a strategy and define key messages, involve in research efforts or develop educational programs. This will assist you as an advocate to use your time and energy effectively in order to reach the outcomes you aim for. Each chapter comes with useful templates and resources to help get started. The toolkit is available both in English and in Spanish.


What it does

There are multiple ways this toolkit can help rare disease advocacy. In the first place, it helps parents to self-advocate on behalf of their child by understanding the disease, treatment options, side effect management or communicating with the medical team.

In a more extensive way, it offers general advocacy principles for patient organizations, foundations and philanthropists or for those who want to educates themselves on disease and treatment, access to treatment, HTA and reimbursement, scientific concepts and project management tools such as fundraising, organizing a conference or stakeholder interaction.

For patient advocate experts, this toolkit also provides the opportunity to connect with likeminded advocates, spotting educational opportunities and creating strong bonds between patient advocates regardless of the rare disease area.

Open access

Share4Rare believes that advocacy tools should be made accessible for everyone. To support rare disease advocacy, all resources provided in this toolkit are openly accessible to anyone interested. The toolkit builds on the needs and interests of the Share4Rare community and is a living resource that gets updated regularly. If you find that something is missing in the document please do not hesitate to contact us via You are more than welcome to help us improve this platform!

Patient advocacy