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.
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