Mito Community Survey 2022

We need you to help us shape the future of Mito Foundation. We are the only Australian organisation dedicated to helping people impacted by mitochondrial disease (mito). We offer support through various services that aim to improve quality of life and achieve better health outcomes for the mito community. We work with the mito community to understand their needs and ensure our work makes the biggest difference to their lives. 

In March 2022, you will have an opportunity to share your experiences of mito and tell us about your interactions with Mito Foundation.

We last ran a survey like this in 2017 and we really want to hear from you. Your feedback will help shape our priorities for the months and years to come and to focus on activities that will make a real difference. 

We will take action based on this survey. Previously, the mito community told us that:


  • Many mito community members needed more mental health support. To address this, the foundation introduced the Wellbeing Mito Connect Call series with Psychologist and mito community member, Shelley Beverley


  • We weren’t doing enough to help you find the allied health services you needed. This led to the creation of Mito Exercise Physiology Network to bring together exercise physiologists with experience in treating mito. We’ve also included more allied health presentations at Mito Information Days


  • It wasn’t always easy to find health information. To improve this, we redesigned the navigation of our website's resources, including creating the resource hubWe also introduced accessibility features such as closed captioning for major digital events.


The 2022 Mito Community Survey will launch in March 2022. The survey is confidential and all questions are voluntary. Please keep an eye out for your personal email invitation. You can contact the Helpline if you would prefer to complete the survey over the phone. We’ll update you in March once the survey is ready for your response.


Thank you for helping us focus on what matters most to the mito community.