Living with mitochondrial disease (mito) can affect different parts of life at different times. The information or support that feels relevant may also change as your health, work, study, relationships or circumstances change.
You can use this page to help you find whats right for you at this time.
Mito Foundation Helpline
The Helpline is a starting point if you have questions, would like general information or are unsure which support may be relevant.
Peer support
Access one-on-one support through the peer support network to connect with others who have lived experience of mito.
Events
Our events are opportunities to build knowledge, connect, and share experiences with the mito community.
Mito support community
Facebook group for people impacted by mito. The group provides an online space to connect with others, ask questions and share experiences.
Support groups for different types of mito
Some types of mito have dedicated Facebook communities or support groups.
Visit the types of mito page to see whether your type of mito is listed. On the relevant page, open the Support groups tab to find available community links. Some groups are managed outside Mito Foundation so their membership, moderation and privacy arrangements may differ.
Different emotional responses
Mito can bring different challenges and emotions. People may respond in different ways, and feelings can change over time.
You may relate to some of the words in the image, all of them or none of them.
There is no single or expected way to feel.
Support and services
Get free, independent help to understand and use the National Disability Insurance Scheme (NDIS).
Mito Foundation’s NDIS Navigation Service is for people in Australia with a confirmed diagnosis of mito.
Access the NDIS Navigation Service
Find information about help with money, transport, housing, equipment and daily life.
This support is for people with mito, families and carers, whether or not they use the National Disability Insurance Scheme (NDIS).
Find health professionals and clinics with experience supporting people with mito.
Mito Foundation can help you explore the available directories and find options that may be relevant to your needs.
Find information about workplace rights, flexible work and reasonable adjustments.
Learn about support that may help you stay at work, return to work or manage changes in your work needs.
Being your own advocate can mean speaking up about your needs and taking an active role in conversations about your health care.
This resource covers preparing for appointments, finding reliable health information and taking part in shared decision-making with your health professionals.
Emotional wellbeing
Find information that may help you prepare to talk about mito with relatives, friends and other people involved in your life.
You can decide what to share and when the time feels right for your family.
Read about talking with family and friends
Living with mito can affect emotional wellbeing as well as physical health.
Find information about emotional wellbeing, everyday challenges and support options for people living with mito.
Mental health and mito
Family members, friends and carers may also have questions or need information and support for their own wellbeing.
Mito Foundation has separate information for people supporting someone living with mito.
Find support for families, friends and carers
Grief can relate to diagnosis, changes in health, loss of independence, anticipated loss or bereavement.
Mito Foundation has information and resources for people experiencing grief and loss.
Find support for families, friends and carers
Still unsure where to start?
The Mito Foundation Helpline can help you find information and understand which Mito Foundation services or resources may be relevant.
Helpful resources
Disclaimer: Resources provided by the Australian Mitochondrial Disease Foundation Limited (Mito Foundation), offers general information and is not a substitute for medical advice. It is essential to assess the suitability of the content for your individual circumstances and make decisions based on your medical condition. The information’s accuracy is subject to change, and we do not guarantee ongoing currency or availability. While efforts are made to ensure accuracy, Mito Foundation is not obligated to provide updated information. The copyright for this document and its content belongs to, or is licensed to, Mito Foundation, and reproduction without prior written consent is prohibited.
Author(s): Mito Foundation
Version: 1.1
Date published: 22 February 2024
Last revised: 28 July 2026Â Â Â
