Rare Disease Disability Advocacy Update: April – July 2026

Rare Voices Australia (RVA) continues to advocate for Australians living with rare disease disability. Between April and July 2026, our work included disability reform discussions, National Disability Insurance Scheme (NDIS) consultations, health and disability initiatives, research activities, and leadership forums across the sector.

Submissions

NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026

RVA lodged two submissions to the Senate Inquiry into the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026.

In our submissions, RVA described the challenges experienced by people living with rare disease disability, particularly where conditions are progressive, degenerative, episodic or fluctuating and do not fit standard disability assessment and planning models.

Download Submission 1 (PDF)

Download Submission 2 (PDF)

Peak Body Participation

Disability Representative and Carer Organisation Forum

RVA has joined the National Disability Insurance Agency (NDIA) Disability Representative and Carer Organisation (DRCO) Forum. We participated in our first forum on 28 May with NDIA Chief Executive Officer, Graeme Head, and senior leadership. The DRCO Forum is an important national forum where organisations that represent people with disability, families and carers can engage directly with the NDIA on NDIS policy, design, implementation and reform.

RVA also participated in the Quarterly Review Forum on 29 May with the NDIS Independent Advisory Council (IAC).

NDIS Neurodegenerative, Palliative Care and Rare Disease Advisory Group

RVA continues to represent the rare disease disability community through the NDIS Neurodegenerative, Palliative Care and Rare Disease Advisory Group. We provide advice on service access, care pathways, and future reforms.

NDIS Mandatory Registration and Market Reform

RVA also took part in stakeholder discussions on proposed mandatory registration requirements and market reforms for Supported Independent Living (SIL) providers. We highlighted the need to maintain participant choice and ensure ongoing access to specialised supports. This is especially important for people living with a rare disease, people with complex health conditions, and people living in regional, rural, and remote communities

Rare Disease Disability Network

In July, RVA and members of the Rare Disease Disability Network met with the NDIA to discuss ways of participating in the testing and implementation of the new Support Needs Assessment process.

Health and Disability Interface

Queensland Health and Disability Interface Advisory Group

RVA continues to contribute to the Queensland Health and Disability Interface Advisory Group. The group focuses on improving coordination between health and disability systems and access to reasonable adjustments. RVA provides insight into the advocacy opportunities available at state and territory level relevant to people living with rare disease disability.

Queensland Health Disability Awareness Training

In May, RVA joined a state-wide recorded training webinar for Queensland Health staff on Reasonable Adjustments in Healthcare for People with Sensory Needs. The session highlighted barriers to healthcare access for people with rare disease disability and sensory needs and provided practical strategies to improve consumer experiences and outcomes, including through the Rare Disease Disability Toolkit resources.

Conferences and Sector Events 

Rare Developmental and Epileptic Encephalopathies Roundtable

In April, RVA participated in a roundtable on rare developmental and epileptic encephalopathies (DEE).

RVA also made a submission to the Senate Community Affairs References Committee Inquiry into Epilepsy in Australia. The submission highlighted the strong connection between epilepsy and rare disease.

National Disability Research Symposium

RVA represented the rare disease disability community at the National Disability Research Symposium (NDRS) in May. We advocated for greater investment in research on rare and complex disability.

Queensland Disability Roundtable

In June, RVA presented in the Queensland Disability Roundtable on Improving Healthcare for People with Intellectual Disability. RVA highlighted barriers faced by people living with rare disease disability.

Niemann-Pick National Conference

RVA presented at the Niemann-Pick Conference in Melbourne in June hosted by RVA Partner, the Australian NPC Disease Foundation. We provided updates on disability advocacy, NDIS reforms, and resources available through the Rare Disease Disability Toolkit.

Australian Federation of Disability Organisations National Advocacy Conference

RVA attended the Australian Federation of Disability Organisations (AFDO) National Advocacy Conference in June. We contributed to discussions on disability reform, safeguarding, and advocacy leadership.

Myasthenia Alliance Australia Webinar

In July, RVA Partner, Myasthenia Alliance Australia, co-hosted a webinar with RVA. RVA’s Disability Advocacy Manager, Fiona Lawton spoke about rare disease disability advocacy activities, the rare disease disability journey, and practical ways to use the Rare Disease Disability Toolkit to support self-advocacy and service navigation.