Rare Voices Australia (RVA) continues to advocate for Australians living with rare disease disability through engagement in key disability reform initiatives.
You can read about the Rare Disease Disability Project at RVA’s website. We are proudly delivering projects for the Peer Support and Capacity Building grant for the National Disability Insurance Scheme (NDIS).
Ministerial Engagement
RVA wrote to the following Members of Parliament to call for meaningful co-design of disability reforms with the rare disease sector:
- Hon Mark Butler MP, Minister for Disability and the NDIS and Minister for Health and Ageing
- Senator the Hon Jenny McAllister, Minister for the NDIS
- Dr Mike Freelander MP, Member for Macarthur
Submission to the NDIS Evidence Advisory Committee
RVA provided a submission to the NDIS Evidence Advisory Committee September 2025 consultation, highlighting the ongoing challenges the rare disease disability community faces in providing peer-reviewed research to justify NDIS supports. The submission also calls for the introduction of a rare disease disability category for data collection. Read RVA’s submission (PDF) at RVA’s website.
Advisory Group Workshop
RVA participated in an out-of-session workshop of the Neurodegenerative, Palliative Care and Rare Disease Advisory Group, focusing on the future role of Navigators in the NDIS.
NDIS Stakeholder Engagement
RVA joined other peak organisations for the NDIS Stakeholder webinar series on the new way of planning. Topics included the I-CAN Assessment Tool and the National Disability Insurance Agency (NDIA) workforce transition. Each session featured presentations and interactive Q&A with NDIA experts.
Meeting with the NDIA Stakeholder Team
RVA met with the NDIA stakeholder team, including members from the Technical Advisory and Practice Improvement Branch (TAPIB), to discuss the Replacement Supports process, particularly for communication aids, applications, and smart technology. RVA continues to raise systemic issues to improve outcomes for NDIS participants living with rare disease disability.
