Beginning your journey with mitochondrial disease (mito) can be difficult, especially if you are unfamiliar with the disease. Here you will find links to events to increase your understanding of mito, and helpful videos and fact sheets to help manage your day-to-day life.

Key Services

Call the Mito Helpline to talk to a support officer for general advice, assistance in seeking a referral or more information on Mito Foundation support services.

Consensus-based recommendations for medical professionals who diagnose and manage patients with mitochondrial diseases

 Attend a support event in your local area or online, including Information Days, Mito Meet-ups and Mito Connect Calls to keep you informed and connected.

The Mito Registry collects important information about Australians with confirmed or suspected mito for the purpose of research into treatments and cures.

Helpful Resources

Link to The Benefits of a Genetic Diagnosis Video

The Benefits of a Genetic Diagnosis

Video

At a Tasmania Mito Information Day, Dr. Christina Liang (Staff Specialist Neurologist) spoke about the benefits of receiving a confirmed genetic diagnosis for mitochondrial disease.

Link to Genetic Counselling and Mito Video

Genetic Counselling and Mito

Video

Mito Registry Co-ordinator and recent graduate Genetic Counsellor, Emma Celis, explains the role of genetic counselling for both those with a confirmed mito diagnosis and those with suspected mito who are still searching for answers.

Link to Managing Mito, clinical practice and mito experiences Video

Managing Mito, clinical practice and mito experiences

Video

At a Digital Mito Information Day, Janet Long and Stephanie Best presented work done around the management of mito from the perspective of clinicians and people with mito. This included work on how apps, telehealth and other virtual resources can assist with problems unique to living with a rare disorder 

 

Link to First Steps With Mito Guide Fact Sheet

First Steps With Mito Guide

Fact Sheet

The diagnostic journey for those affected by mito often takes years and can be extremely distressing and isolating. This fact sheet aims to help you navigate information about mito and the health system.

Link to Driving Change for the Mito Community Video

Driving Change for the Mito Community

Video

At a Digital Mito Information Day, Clare Stuart (Mito Foundation Policy & Advocacy Manager) spoke about Mito Foundation’s policy and advocacy work, including mitochondrial donation, improving access to genetic technologies and working to improve supports available through NDIS and other government programs.

Link to Understanding Your Diagnosis Fact Sheet

Understanding Your Diagnosis

Fact Sheet

Due to the varied nature of mito, diagnosing mito can be difficult. This fact sheet helps to demystify this by providing an explanation of the different types of diagnosis.

Link to Mito Foundation Patient Information Flyer Fact Sheet

Mito Foundation Patient Information Flyer

Fact Sheet

This flyer provides a snapshot of key points concerning mito. This format is easy to print and share with health professionals who are unfamiliar with mito.

Link to Genetics and Mito Fact Sheet Page

Genetics and Mito

Fact Sheet Page

All your physical features are controlled by your genes, which you inherited from your parents. Genetic changes can lead to diseases such as mitochondrial disease.

Link to Patient Pathways Program Introduction Video

Patient Pathways Program Introduction

Video

Michele Hemmings (Patient Pathways Telehealth Nurse) introduces the Patient Pathways Program and shares why members of the mito community can benefit from accessing this service. To learn more, please call our Helpline on 1300 977 180 or email helpline@mito.org.au