Sector-Wide Activity Scan: National Strategic Action Plan for Rare Diseases Implementation


The Australian Government’s National Strategic Action Plan for Rare Diseases (the Action Plan) was launched in February 2020, over two years ago. Since that time, the rare disease sector has been collaboratively progressing implementation of the Action Plan. To gauge how far we have come, Rare Voices Australia (RVA) is leading an activity scan of the sectors’ collective efforts. The aim of this work is not only to map what is being done and what has been achieved, but also to highlight any gaps in the sector’s progress and any areas where we can encourage greater collaboration and prevent duplication.  

To encourage cross-sector participation in the Action Plan activity scan, RVA have chosen a simple tool—Google Jamboards—where each stakeholder group can share current, past or forthcoming projects, initiatives, tools, resources, networks and processes. These Jamboards are active currently and will remain open until 17 October 2022. If you have progressed implementation of the Action Plan but have not received an email with information and a link to a Jamboard, please contact Falak Helwani, RVA’s Research and Evaluation Manager at [email protected] or call 0448 505 184.  

The results of this mapping exercise will demonstrate how far the sector has come and what is left to do. The results will be shared at the 2022 National Rare Disease Summit (Summit) in November and inform Summit Workshops (for in-person Summit attendees only). During these small group workshops there will be an opportunity to discuss the most urgent gaps in Action Plan implementation and who could or should be responsible for furthering progress in those specific gap areas. Participants will be asked to share any activities that were not captured via the Jamboards and encouraged to identify any obvious duplication or risk for duplicated efforts. RVA hopes this exercise will facilitate increased collaboration among stakeholders with similar objectives (if any) and guide next steps to fill the gaps for full implementation of the Action Plan.

RVA is looking forward to the outcomes of this work and to showcasing the collective efforts of the rare disease sector. Thank you to those who have already contributed to this exercise. Your involvement is appreciated.

For more information or if you have any questions about this work, please contact Falak Helwani at [email protected] or call 0448 505 184.