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.
2026 Mito Community Survey
Help shape what comes next for Australia’s mito community Â
Take part in the 2026 National Mito Community Survey and tell us what is most important to you and your loved ones and what would help you on your mito journey.Â
The survey is open to people living with mito, people with suspected mito, carers and family members across Australia. Your responses will help guide future support, information, advocacy and research priorities. Â
Insights from the 2022 survey helped inform free one-to-one NDIS navigation support, and more tailored mito information.Â
The survey takes around 30 minutes to complete, and you can save your responses and return later. Â
As a thank you, you can enter prize draws to win double registrations to a 2027 The Bloody Long Walk or Mito Community Summit, plus a $50 gift voucher if you complete an optional survey section.
Our 2026 National Community Survey aims to build a picture of Australians living with mito are experiencing. We want to understand what matters most to you right now. Your feedback will help guide future support, information, advocacy and community initiatives. Â
What you told us in 2022 helped shape what came next
YOU TOLD US
you need help navigating the NDIS
WHAT WE DID
provided over 300 hours a year of free NDIS Navigation support to community members.
YOU TOLD US
you need information that’s relevant to you
WHAT WE DID
launched MitoHub, MitoCast, and Types of Mito resources
YOU TOLD US
you wanted more opportunities to have your say
WHAT WE DID
conducted Community Workshops and launched the Mito Stories Project.
YOU TOLD US
you wanted more support navigating the healthcare system
Mito Stories Project
Left to figure it out alone: new insights into experiences of navigating mito care
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.
2022 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
