Rare disease organisations are an important part of the Australian rare disease community. These organisations can understand, capture and communicate the lived experience of those impacted by a rare condition in a way no one else in the sector can. The rare disease community has specific and essential expertise in living with a rare condition and understanding the challenges, needs and burdens these conditions impose. This makes rare disease organisations and their leaders an essential part of the sector.
“Rare disease organisations play a key role in raising disease awareness and providing critical person-centred information. These organisations are vital to the rare disease sector and often fill gaps in the system, not just in terms of awareness and education, but also care and support and, increasingly, in the research sphere.” — National Strategic Action Plan for Rare Diseases (2020)
The National Strategic Action Plan for Rare Diseases (the Action Plan) recognises the critical role rare disease organisations play in the rare disease sector. Providing support, education, advocacy and initiating research in the rare disease sector is complex.
To help address the need for additional support and resources to strengthen the rare disease sector, which is acknowledged in the Action Plan, Rare Voices Australia (RVA) is launching Engaged, Ethical and Effective: A Guide for Rare Disease Organisation Leaders in Australia (the Guide).
Who Is the Guide for and How Can It Be Used?
The Guide is for both established rare disease organisations and those who are interested in setting up an organisation. For existing rare disease organisations, the Guide can be used in several ways to complement the current status, resources and development phase of your organisation. For those who are investigating how to establish an organisation, this is an easy to follow resource that covers the key areas to consider.
Chapter 1: Introduction to Rare Diseases, RVA, the Australian Landscape and the Action Plan
Chapter 2: Rare Disease Organisation Strategy
Chapter 3: The Vital Roles of Rare Disease Organisations
Chapter 4: Ethical Rare Disease Organisations
Chapter 5: Governance Foundations
Chapter 6: Funding Your Rare Disease Organisation
Chapter 7: Community Engagement
Appendices: Assessment Tools and Planning Template
Each section also contains information about the topic, links to relevant resources and a checklist or self-evaluation tool for identifying current strengths and areas for development.
Thank you to several of our RVA Partner organisations who contributed to the Guide throughout its evolution.
Download Engaged, Ethical and Effective: A Guide for Rare Disease Organisation Leaders in Australia (PDF)
If you have any questions about this Guide or any other education-related matters, please reach out to RVA’s Education and Advocacy Manager: [email protected]