30 September 2026
New resources support people living with rare disease and disability
People and families living with rare diseases and disability have access to a suite of updated resources to help navigate healthcare and other support systems. The resources also aim to support self-advocacy and build an understanding of their rights.
Rare Voices Australia has updated its Rare Disease Disability Toolkit with new resources to support people living with rare disease and disability.
Rare Voices Australia has updated its Rare Disease Disability Toolkit with input from network members, including Save Our Sons Duchenne Foundation, to strengthen disability rights and self-advocacy.
The toolkit includes a Rare Disease Disability Management Plan, guidance on reasonable adjustments in healthcare, a resource for navigating air travel with rare disease disability, and information about the National Disability Insurance Scheme (NDIS).
Each resource includes a main guide and additional tools that can be used with support teams to help people speak up for themselves and navigate the systems they rely on.
Save Our Sons Founder Elie Eid said access to clear, practical information was an important part of supporting people living with rare disease and disability.
“Families living with Duchenne and other rare diseases, are often required to navigate complex systems while also managing the challenges of their condition,” Mr Eid said.
“Having clear information about their rights and the support available can give families greater confidence to advocate for what they need.”
Save Our Sons contributed to the development of the updated toolkit alongside other members of the rare disease community.
To explore the full Rare Disease Disability Toolkit and access all available resources: