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Australian Clinical Standards of Care: Have your say

28 May 2020

The Mito Foundation is pleased to offer mitochondrial disease (mito) patients a unique opportunity to contribute to the effective implementation of clinical standards of care for mito in Australia.

This project, funded by Mito Foundation and led by Professor John Christodoulou, aims to establish the best approach to implementing new Australian guidelines, adapted from the US health system for the Australian context by leading Australian mitochondrial disease experts.

Online focus groups will be held throughout June to seek the input of Australian mito patients with a confirmed genetic diagnosis.

This is a great opportunity to share your experiences and help shape clinical practice for all Australian mito patients. To register your interest in participating in an upcoming focus group, please complete the form below.

Standards of Care Focus Groups Registration

First Name
Last Name
Email
To particpate in the focus group, a confirmed genetic diagnosis is required. Please select the option that applies to you.*
- Yes, I have a confirmed genetic diagnosis
- Yes, I care for a child with a confirmed genetic diagnosis
- Yes, myself and my child have a confirmed genetic diagnosis
If you are joining a focus group for yourself, please let us know if the following dates work for you.
- 11:00am - 12:00pm AEST, Wednesday 15 July
- 1:30pm - 2:30pm AEST, Friday 17 July
- 1:30pm - 2:30pm AEST, Tuesday 21 July
- I am interested but this time does not work for me.
All focus groups will be held digitally.
If you are joining a focus group on behalf of your child, please let us know if the following dates work for you.
- 2:00pm - 3:00pm AEST, Wednesday 15 July
- 11:00am - 12:00pm AEST, Friday 17 July
- 11:00am - 12:00pm AEST, Tuesday 21 July
- I am interested but this time does not work for me.

Register For the Mito Registry

Registering for the Mito Registry will ensure patients have the earliest possible opportunity to enter any relevant study or clinical trial. Please click here to register.

About Us

Mito Foundation supports people affected by mitochondrial disease (mito), funds essential research into the prevention, diagnosis, treatment and cures of mitochondrial disorders, and increases awareness and education about this devastating disease.

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- I have mito
- My child has/had mito
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The Mito Foundation would like to acknowledge the traditional custodians of the land on which we work. We pay respect to their cultures and to Elders past and present and extend that respect to all Aboriginal and Torres Strait Islander peoples today.