Rare Voices Australia (RVA) is preparing for our annual Strategy Review session in July where, as an organisation, we discuss our focus areas and priorities for the future. As one of our valued stakeholders, we are asking for your input ahead of our Strategy Review meeting. Your responses will be considered and assist in informing RVA’s priorities in 2024 and beyond. The survey will take approximately 10 minutes to complete.

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* 1. Full name

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* 2. Organisation

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* 3. Email address

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* 4. Stakeholder group

Part 1: Rare Voices Australia’s Role as the National Peak Body for Australians Living with a Rare Disease

RVA aims to provide a strong, common voice to promote policy throughout health, disability and other systems that work for Australians living with a rare disease. As the national peak body for Australians living with a rare disease, RVA advocates for all rare disease communities. Stakeholders look to RVA to provide policy leadership and systemic advocacy; build capacity of consumer-led rare disease groups/organisations; and effectively partner with key stakeholders. RVA’s work is non-disease specific and is based on the commonalities of rare disease. Our advocacy focuses on rare disease policy, processes and systems.

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* 5. What do you value most about RVA's peak body and advocacy work?

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* 6. Please share any opportunities for improvement regarding RVA’s peak body and advocacy work that you can identify.

Part 2: Partnering with Key Stakeholders in the Rare Disease Sector

RVA partners with key stakeholders in the rare disease sector, including rare disease groups/organisations; researchers; clinicians; industry; and governments. This collaborative, multi-stakeholder approach is critical to raising the profile and awareness of rare diseases in Australia and to driving systemic change in government policy.

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* 7. What do you value most about partnering with RVA?

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* 8. Please share any opportunities for improvement in partnering with RVA that you can identify.

Part 3: The Ongoing Collaborative Implementation of the Australian Government’s National Strategic Action Plan for Rare Diseases

Alongside other stakeholders, RVA is leading the collaborative implementation of the Australian Government’s National Strategic Action Plan for Rare Diseases (the Action Plan), the first nationally coordinated effort to address rare diseases in Australia. The Action Plan consists of three interrelated pillars:
  • Pillar 1: Awareness and Education
  • Pillar 2: Care and Support
  • Pillar 3: Research and Data
The following questions relate to each pillar of the Action Plan. Although not an exhaustive list, we have included several prompts regarding RVA-led activities and other activities where RVA has provided peak body input that sit under these key areas in each pillar. (Note: you will notice there is overlap between each pillar.)
Pillar 1: Awareness and Education

Key activities RVA has led or contributed to include the biennial National Rare Disease Summit; the annual Rare Disease Day Parliamentary Event; the Rare Awareness Rare Education (RARE) Portal; RVA’s Online Education Portal; RVA’s work as the national alliance representing Australia for Rare Disease Day; and customised mentoring and education for RVA Partner groups/organisations (rare disease groups/organisations).

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* 9. Please rank the following RVA activities from most to least important in terms of progressing activity related to the Care and Support Pillar.

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* 10. Share anything else you feel RVA and the rare disease sector should focus on regarding implementation of the Awareness and Education Pillar.

Pillar 2: Care and Support

Key activities RVA has led or contributed to include The Navigator Project; health systems and health workforce advocacy; RVA’s consortium role in the Rare Disease Awareness, Education, Support and Training (RArEST) Project; the RARE Portal; Newborn Bloodspot Screening advocacy; health technology assessment advocacy; the Refreshed National Medicines Policy; and ongoing National Disability Insurance Scheme (NDIS) and broader disability advocacy.

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* 11. Please rank the following RVA activities from most to least important in terms of progressing activity related to the Care and Support Pillar.

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* 12. Share anything else you feel RVA and the rare disease sector should focus on regarding implementation of the Care and Support Pillar.

Pillar 3: Research and Data

Key activities RVA has led or contributed to include measuring implementation of the Action Plan; rare disease research advocacy; rare disease research investment advocacy; advocacy to embed research and innovation into clinical care and enable timely translation of new knowledge; the RARE Portal; RVA’s Research and Project Partnerships; progressing work on guidelines for Australian Rare Disease Centres of Expertise; the 'Rare Metabolic Disease Workforce White Paper: Towards a Strengthened Rare Disease Workforce for Australia'; and 'Recommendations for a National Approach to Rare Disease Data', which includes the findings from the Australian Rare Disease Registry Audit project and strategic recommendations and associated implementation priorities for a national approach to rare disease data.

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* 13. Please rank the following RVA activities from most to least important in terms of progressing activity related to the Research and Data Pillar.

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* 14. Share anything else you feel RVA and the rare disease sector should focus on regarding implementation of the Research and Data Pillar

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