Activity Scan: National Strategic Action Plan for Rare Diseases Implementation

As you may be aware, Rare Voices Australia (RVA) has been monitoring the progress of the collaborative implementation of the National Strategic Action Plan for Rare Diseases (the Action Plan) through an ongoing activity scan. As part of this, last year, RVA invited all RVA Partners to share their contributions to progressing implementation of the Action Plan since its launch in 2020. We understand that some RVA Partners may have not had capacity to complete this at the time. To ensure RVA captures your organisation’s work, we are again reaching out to personally invite you to share any current or past projects/initiatives, related to the Action Plan.

To contribute, please answer the questions in the form below. If you have numerous projects/initiatives to report on, it’s best to save your work in a Word document first and then complete the form once the content is ready.

Action Plan Pillar Summaries

Pillar 1: Awareness and Education Summary (PDF)
Pillar 2: Care and Support Summary (PDF)
Pillar 3: Research and Data Summary (PDF)

The above summaries include the priorities within each Action Plan Pillar and will help you with completing the form.

Your contributions will support RVA to accurately monitor Action Plan progress. RVA will also use this information as part of our advocacy to government and others in the rare disease sector.

Action Plan Implementation

Name(Required)
Please list and describe any of your organisation’s activities that align with Action Plan Pillar 1. Awareness and Education: Pillar 1 Priorities:

1.1 Increase every Australian’s awareness of rare diseases including, where applicable, relevant prevention measures.

1.2 Ensure Australians living with a rare disease have access to information and education that enables them to be active participants in their rare disease journey.

1.3 Develop a national rare disease workforce strategy that responds to current and future demands, including the impact of genomics.

Please leave the below field blank if you do not have activities that align with this Pillar.

Please list and describe any of your organisation’s activities that align with Action Plan Pillar 2: Care and Support:

2.1: Provide rare disease care and support that is integrated and appropriate for all Australians living with a rare disease, while being both person and family-centred.

2.2: Ensure diagnosis of a rare disease is timely and accurate.

2.3: Facilitate increased reproductive confidence.

2.4: Enable all Australians to have equitable access to the best available health technology.

2.5: Integrate mental health, and social and emotional wellbeing, into rare disease care and support.


Please leave the below field blank if you do not have activities that align with this Pillar.

Please list and describe any of your organisation’s activities that align with Action Plan Pillar 3: Research and Data Pillar 3 Priorities:

3.1: Enable coordinated and collaborative data collection to facilitate the monitoring and cumulative knowledge of rare diseases, informing care management, research and health system planning.

3.2: Develop a national research strategy for rare diseases to foster, support and drive all types of research for rare diseases, contributing to agreed priorities and systematically addressing gaps.

3.3: Ensure research into rare diseases is collaborative and person-centred.

3.4: Translate research and innovation into clinical care; clinical care informs research and innovation.


Please leave the below field blank if you do not have activities that align with this Pillar.