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.