Rare Voices Australia (RVA) has been engaging in ongoing systemic advocacy to seek pathways to ensure that the National Disability Insurance Scheme (NDIS) can better respond to the unique needs and challenges of people living with a disability caused by rare disease. This work has led to an exclusive opportunity for RVA and a limited number of RVA Partner organisations to participate in an interactive online workshop with the National Disability Insurance Agency (NDIA). The workshop will look at specific recommendations from the National Strategic Action Plan for Rare Diseases, the report, Disability & Rare Disease: Towards Person Centred Care for Australians with Rare Diseases, as well as issues or concerns raised by RVA in recent submissions and discussions with the NDIA.
Online Workshop Details (TBC)
Date: Wednesday 1 December
Time: 2pm – 5pm AEDT
Please note: the above details are to be confirmed.
Expressions of Interest
RVA is seeking expressions of interest (EOI) from leaders of RVA Partner organisations to participate in this workshop. Please send a one-page EOI to [email protected] by COB Friday 19 November addressing the following:
- The name of the person you propose to represent your organisation at this workshop
- A brief overview of the experience your organisation/community has with the NDIS
- A short description of how you would ensure your contribution is representative of the views of your community
- Summary of your experience with and approach to rare disease policy and systemic advocacy
Please note: this opportunity is open to RVA Partner organisations only.
To facilitate in-depth discussion, workshop numbers will be capped and we anticipate that interest will exceed capacity. In selecting candidates, RVA will consider:
- Your EOI
- Broad representation of the rare disease community
- Diverse range of experiences with the NDIS
- Demonstrated alignment with RVA’s advocacy approach
- Willingness and ability to represent the broader rare disease community
Questions can be directed to Louise Healy, RVA’s Education and Advocacy Manager: [email protected]
