Leading the collaborative development of the Australian Government’s National Strategic Action Plan for Rare Diseases
The National Strategic Action Plan for Rare Diseases (the Action Plan) is the first nationally coordinated effort to address rare diseases in Australia.13 RVA was commissioned by the Australian Government to lead the collaborative development of the Action Plan. Informed by an extensive multistakeholder consultation process, the Action Plan represents the views of the rare disease sector. It outlines a comprehensive, collaborative, and evidence-based approach.
Our advocacy goal
As the national peak body for Australians living with a rare disease, our goal was to develop an Action Plan in partnership with the rare disease sector, for the rare disease sector. Launched in 2020, the Action Plan is a nationally coordinated, comprehensive policy framework that responds to the challenges of living with a rare disease and acknowledges rare diseases as a national policy priority.
The Action Plan’s vision is to drive the best possible health and wellbeing outcomes for Australians living with a rare disease through collaboration and co-design within and by the Australian rare disease sector. It aligns Australian rare disease policy with international best-practice policy frameworks and provides a shared policy language for the rare disease sector.
Ensuring key voices in the rare disease sector were heard and considered
A primary principle of the Action Plan is a person-centred approach. Working in partnership with Australians living with a rare disease was key and helped identify goals and priorities within the Action Plan. We were struck by the entire sector’s willingness to collaborate.
Approach 1: Networking and collaboration
Working in partnership and consulting with different stakeholders in the rare disease sector meant the Action Plan reflected a wide range of goals and priorities.
We listened to the personal stories of people living with a rare disease and other key stakeholders and asked for people’s thoughts throughout the process. Although feedback from members of the rare disease sector sometimes differed, there were many commonalities. These commonalities were prioritised, and when differences of opinions persisted, we focused on what was valuable to most people living with a rare disease.
Approach 2: Communication and storytelling
By listening to the stories of people living with a rare disease, RVA were able to better understand the needs and priorities of their community.
We used an iterative approach, with each consultation building on the outcomes of prior consultations. Activities that ensured effective co-design of the Action Plan included externally facilitated roundtable consultations, face-to-face stakeholder consultations in multiple cities across Australia, and interviews with representatives from state and territory governments.
Partnerships, co-design, and collaboration were key to developing an Action Plan that has generated multipartisan support
The Action Plan was jointly developed by the Australian rare disease sector and the Australian Government. The Action Plan has received multipartisan support, including support from the Australian Government and the opposition political party.
Approach 3: Co-design
The Action Plan was developed ‘by the rare disease sector, for the rare disease sector.’
In response to the Action Plan, the Australian Government funded several projects, including the Rare Disease Awareness, Education, Support and Training (RArEST) Project. The Action Plan has also informed other Australian Government policy reviews and consultations, for example, the National Medicines Policy review, and the House of Representatives Standing Committee on Health, Aged Care and Sport’s Parliamentary Inquiry into approval processes for new drugs and novel medical technologies in Australia. Several organisations have used the Action Plan to guide their activities, including Western Australia’s Health Department, Sydney Local Health District, the Garvan Institute of Medical Research, the Murdoch Children’s Research Institute and Telethon Kids Institute.
The Action Plan is an example of multi-stakeholder collaboration and co-design, a shared language among the sector, and laying the foundations for better health and wellbeing outcomes for people living with a rare disease.
Key messages
This case study highlights the value of:
- Networking and collaboration to gain input and support from key stakeholders in the rare disease sector
- Communication and storytelling to ensure the voices and needs of people living with a rare disease were embedded into the Action Plan
- Co-design to ensure the Action Plan captured the priorities of the rare disease sector
“Although feedback from stakeholders sometimes differed, there were many commonalities. These commonalities were prioritised, and when differences of opinions persisted, we focused on what was most valuable to most people living with rare disease.”
