Relationships
Consider who was brought together, which relationships mattered and how collaboration supported the work.
Practical systemic advocacy
Improving health and wellbeing outcomes for Australians living with a rare disease.
The Taking Action Together Toolkit shares real examples of how the Australian rare disease sector has worked together to advocate for systemic change — and practical approaches and tools that can support others to take action.
The Toolkit
Systemic advocacy can create change beyond one person, service or condition.
The Taking Action Together Toolkit was developed to share what has been learned from systemic advocacy across the Australian rare disease sector. It brings together real examples of people and organisations working collaboratively to influence systems, services and policy.
Rather than prescribing a single way to advocate, the Toolkit identifies approaches that have supported change in different contexts and provides practical tools that can be adapted to different priorities, organisations and communities.
Explore the Toolkit
The Toolkit connects examples of systemic advocacy with practical approaches and resources that can help support your own work.
Explore examples from the Australian rare disease sector and see how people and organisations have worked together to pursue systemic change.
Consider the approaches that supported advocacy, including collaboration, storytelling, co-design, persistence and flexibility.
Adapt the Toolkit’s prompts, ideas and supporting resources to your own advocacy goals, partnerships and context.
Case studies
The Toolkit draws on real examples from the Australian rare disease sector to show how people and organisations have worked together to pursue change beyond an individual service, organisation or rare condition.
Learn from experience
Advocacy takes place in different contexts, involves different people and rarely follows a straight line. The case studies provide examples to learn from rather than formulas to reproduce.
As you explore them, consider not only what changed, but how relationships were built, how lived experience was brought into the work, how messages were communicated and how advocates adapted when circumstances changed.
Learning across examples
The value of a case study is not only the change that was achieved. It can also reveal the relationships, decisions and ways of working that helped make progress possible.
Consider who was brought together, which relationships mattered and how collaboration supported the work.
Look at how the experiences and priorities of people living with rare disease informed advocacy and decision-making.
Notice how complex issues were communicated, whose stories were heard and how the case for change was made.
Consider where persistence, flexibility or a change in strategy was needed as opportunities and barriers emerged.
Approaches & tools
The Toolkit identifies four approaches that have supported systemic advocacy across the Australian rare disease sector. They can be used individually or together and adapted as priorities, relationships and opportunities change.
Practical approaches
Systemic advocacy is rarely a sequence of fixed steps. Different situations may require different combinations of relationship-building, communication, co-design and persistence.
The approaches in the Toolkit are designed to help people reflect, plan and adapt rather than provide a single formula for achieving change.
Four approaches
Consider which approaches are most useful for the change you are trying to achieve and the people who need to be involved.
Systemic change often depends on bringing together people with different knowledge, experience, influence and perspectives. Relationships can help build shared understanding, strengthen advocacy and create opportunities that may not be possible alone.
Clear communication can help people understand both the problem and why change matters. Evidence, lived experience and stories can work together to make complex issues meaningful to different audiences.
Co-design creates opportunities for people affected by an issue to contribute to defining the problem and shaping possible solutions. Meaningful participation requires more than consultation at the end of a process.
Systemic change can take time. Priorities shift, opportunities emerge unexpectedly and strategies that work in one setting may not work in another. Persistence matters, but so does knowing when to adapt.
Companion resources
Four companion documents sit alongside the Taking Action Together Toolkit, providing additional context about rare disease, the Australian health system, the rare disease sector and how the Toolkit itself was developed.
A concise starting point for understanding rare disease and the broader context in which systemic advocacy takes place.
Access the resourceLearn more about the process behind the Taking Action Together Toolkit and how knowledge and experience from across the rare disease sector informed its development.
Access the resourceBuild your understanding of the Australian health system and the environment in which health policy, services and systemic advocacy operate.
Access the resourceUnderstand some of the people, organisations and stakeholders that make up Australia’s rare disease sector and may be relevant to collaborative advocacy.
Access the resourceResource links open in a new browser tab.
Acknowledgements
The Taking Action Together Toolkit was informed by the knowledge, experiences and contributions of people and organisations from across Australia’s rare disease sector.
With thanks
The development of the Toolkit drew on collaboration, discussion and shared learning across the RArEST Project and the broader Australian rare disease community.
Using the Toolkit
If you use or adapt material from the Toolkit, please retain the appropriate attribution and refer to the publication itself for the complete citation and licensing information.
Suggested citation
The full Toolkit contains the recommended citation for acknowledging the authors and organisations responsible for the resource. Please use that citation when referring to the Toolkit in publications, presentations or other materials.
Creative Commons
The Toolkit is made available under a Creative Commons Attribution 4.0 licence. Refer to the Toolkit for the complete licensing statement, attribution requirements and any material excluded from the licence.