Living with a rare disease is about so much more than managing symptoms.
For many people, the impact of rare disease reaches into almost every part of life; healthcare, work, education, finances, relationships, travel, daily activities and the ability to access the support you need.
And when your condition is episodic, fluctuating, complex or poorly understood, navigating disability and support systems can be incredibly difficult.
To support people living with rare disease diabilities, Rare Voices Australia (RVA) have created the Rare Disease Disability Toolkit.
The Toolkit has been nationally co-designed with people living with rare disease disability and is designed to help people build confidence, understand their rights, advocate for themselves and navigate systems that can otherwise feel overwhelming.
Some of the resources include help with:
- Understanding and navigating the NDIS
- Describing your disability and support needs
- Developing a Rare Disease Disability Management Plan
- Asking for reasonable adjustments in healthcare and hospitals
- Advocating for your needs and rights
- Navigating air travel with rare disease disability
- Working with healthcare professionals and support teams
- Finding practical ways to participate more confidently in everyday life
One of the particularly useful aspects of the Toolkit is that it recognises that rare disease disability doesn't always look the same every day. For the estimated 2 million Australians living with a rare disease, these practical tools can help turn “I know I need support, but I don't know how to explain or access it” into something much more manageable.
If you live with a rare disease, care for someone who does, or support patients with rare disease disability, it’s worth exploring.
The Toolkit:
- Includes new peer-to-peer supports.
- Builds capacity in disability rights and self-advocacy.
- Supports people to better access and navigate disability and other systems. For example, health, education and employment systems.
How to Use the Toolkit
Each resource includes a main guide and extra tools to help you speak up for yourself and use together with your support team.
The Toolkit was funded by the Australian Government through the Peer Support and Capacity Building grant for the National Disability Insurance Scheme (NDIS).