Mito Foundation is excited to announce our Newly Diagnosed Support Project. This project will design a service to improve the experience of people newly diagnosed with mitochondrial disease (mito).
We hear from mito community members that the experience of receiving a diagnosis of mito is often traumatic and overwhelming. It is difficult to know where to get support or how to find information to understand what the diagnosis means.
The 2018 Mitochondrial Disease PEEK Study told us that only 6% of study participants felt supported at diagnosis. Our 2022 Mito Community Survey found that:
- 15% of community members did not know how to manage their mito
- 15% lacked the confidence to manage their mito
Mito Foundation is committed to improving the information and support available at the time of diagnosis, and you can help.
What will the project do?
We will work with mito community members and mito-aware health professionals to:
- Understand what information the community needs and how they would like to access it
- Explore opportunities to better connect mito clinics with Mito Foundation.
- Develop resources to showcase various support services and community engagement opportunities
By providing accurate and accessible information, we hope to improve mito community members' health outcomes significantly.
We want to thank everyone who has shared their experiences to highlight this need in our community. The mito community voice drives our work so we appreciate the community's input.
Get involved today
We'll be sending out a survey soon but in the meantime, if you would like to be involved in this project, please get in touch with Laura Barker at services@mito.org.au or call our Helpline on 1300 977 180.