The mito community voice drives the Mito Foundation’s work. We actively and regularly seek input from Australians impacted by mito, their families and carers to guide our priorities and contribute to our work towards better outcomes for the mito community.

Your story can drive change

The Mito Stories Project is a Mito Foundation run research project. It collects and shares mito community stories to drive change that improves the lives of people impacted by mito in Australia. By sharing your experiences, you can help us focus our work on what matters most to you.

Mito Community Survey

The 2022 Mito Community Survey is the most comprehensive survey of the Australian mito community to date. 275 respondents generously shared their experiences and opinions, and many offered to share their stories or to contribute to future work.

Mito Community Survey Insights Reports

Community Engagement Approach

The Community Engagement Approach, developed in consultation with mito community members, describes how Mito Foundation partners with the mito community to work towards its purpose: To end the suffering from mito.

As Mito Foundation grows and our work expands, our engagement with the mito community is growing and changing. We aim to create a consistent approach across the organisation to support our mission and a positive experience for the mito community.

There are many other ways that the mito community contributes to our work and priorities. Find out more below.

A representative group of mito community members actively contributing to strategic priorities

Influencing the design of the mitochondrial donation pilot

Mito community focus groups informed insights about the realities of health services to drive improvements

The 2018 Mitochondrial Disease Patient Experience, Expectations and Knowledge (PEEK) Study