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.

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.

The final Insights Report will be published shortly.

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