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.
Left to figure it out alone: new insights into experiences of navigating mito care
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.
Community insights project report
Dietary Supplements: The challenges faced by Australians living with mito
Many Australians living with mito choose to take dietary supplements. Mito Foundation has worked with the mito community to research the role these play in the management of mito. As part of this work, we have developed a dietary supplements and mito resource.
We have also produced a community insights project report. This was informed by interviews with community members in late 2022. Thank you to those community members for their time and expertise.
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