Rare Disease Disability Advocacy Update – October 2025
Rare Voices Australia (RVA) has been engaging in several key disability initiatives throughout 2025 to advocate on behalf of Australians living with rare disease disability.
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).
Disability Discrimination Act Review
RVA continues to contribute to the national Review of the Disability Discrimination Act (DDA) 1992 led by the Attorney-General’s Department. The review is a crucial step to modernising the DDA to reflect contemporary challenges faced by people living with disability and to support implementation of 15 key recommendations from the Royal Commission into the Violence, Abuse, Neglect and Exploitation of People with Disability.
RVA participated in four targeted online roundtables alongside other peak bodies, professionals, and individuals with lived experience of disability. These roundtables focused on:
- Employment
- Education
- Access and Inclusion
- Community Safety
RVA lodged a formal submission to the consultation.
For more details on how to make a submission or to complete the community survey, visit the Review of the Disability Discrimination Act web page at the Attorney-General Department’s website. The consultation closes on 14 November 2025.
Thriving Kids Initiative
On 2 September 2025, the Hon Mark Butler MP, the Minister for Health and Ageing and the Minister for Disability and the NDIS, referred an inquiry into the Thriving Kids Initiative to the House Standing Committee on Health, Aged Care and Disability.
The Thriving Kids Initiative aims to improve health and wellbeing outcomes for children and young people through better coordination across health, education, and disability services.
RVA lodged a submission to ensure that children with rare or undiagnosed conditions with mild to moderate support needs are identified as a key cohort for consideration. Read RVA’s submission at RVA’s website.
