The RISE Project

We have confirmed the focus of the RISE resources.

Thank you to everyone who shared feedback through surveys and workshops. Your input shaped 5 practical resources.

These resources will help you recognise change and explain what is happening. They will also support planning for future disability needs.

They focus on real challenges you told us about. This includes repeating your story and navigating complex systems.

The resource design and layouts will be simple and easy to use. This matters during fatigue, stress or low energy days.

We are now developing draft resources for community review. We will share these soon and invite your feedback.

We've defined the Project Opportunity Statement:

People with rare, progressive and degenerative conditions need better tools to explain their functional impact and how these change over time, plan for changes, and stay supported as their condition progresses.

Over the past few months, we’ve been listening to people living with rare and progressive conditions, their families and carers.

Through surveys, workshops and shared stories, people told us they often struggle to recognise change, explain how it affects daily life, and know what to do next when support needs shift. Many described the exhaustion of repeating their story, the uncertainty of asking for help, and the stress of waiting for decisions. What we heard was consistent across conditions.

These insights are now guiding the next stage of the RISE Project, where we are developing practical, accessible resources to help people explain change, plan ahead and navigate support as their needs change over time.

The RISE Project has reached an important stage.

We have completed the first draft of our opportunity statement. This statement explains the problem we want to solve and the change we hope to create. It is now being reviewed with our partners.

We are grateful to everyone who shared their experiences through community surveys. Your insights help us understand the barriers you face when using the NDIS, and what support would make the biggest difference.

We have also begun analysing insights from the Mito Stories Project, our surveys and the recent workshop. These insights are helping us identify the main themes for the next step, which is creating our resource proposal. This proposal will outline the practical tools we will design with our partners to support people living with rare, progressive conditions.

Our community surveys are live and collecting helpful insights from people across the rare disease community. These responses will guide how we shape resources that make navigating the NDIS simpler and more empowering.

We also held an in-person workshop at the Mito Community Summit, where community members shared ideas about what kinds of tools would be most useful.

Next, we’ll bring together all this feedback to create a shared plan for the resources we’ll design with our partners.

The RISE Project team underway. We've started to engage with partner organisations across the rare disease community.

We are pleased to announce that the Childhood Dementia Initiative and the Children’s Tumour Foundation have joined as project partners. Their expertise and collaboration will help us ensure the resources we co-design meet real community needs.

Our next focus is on developing a community survey to gather insights from people living with rare, progressive conditions and their supporters. These insights will guide how we shape practical resources to make navigating the NDIS easier and more empowering.