Mito Foundation works to drive improvements in services available for the mito community, encourage research into mitochondrial disease (mito) and ensure that treatments for mito are available. We do this in collaboration with mito community members who contribute their experiences to setting our advocacy priorities, informing our submissions and being involved in policy development that affects the mito community.
Mito Foundation works with many other organisations to drive change, including:
- Australian Genomics Health Alliance (AGHA) is a collaboration that ensures that the benefits of genetic and genomic research improve health care in Australia. Mito Foundation is one of several community organisations working alongside researchers in AGHA, including through the mitochondrial flagship project and MacKenzie’s Mission.
- The Childhood Dementia Initiative (CDI) aims to transform research, care and quality of life for children with dementia. This includes many children with mito who experience neurological symptoms that worsen over time. Mito Foundation is one of several partners working with CDI and our CEO, Sean Murray is on the board of CDI.
- Rare Voices Australia (RVA) has driven the creation of Australia’s first National Strategic Action Plan for Rare Diseases and continues to advocate for the implementation of this plan. This includes improvements to awareness, education, health, support and research for rare diseases. Mito Foundation has contributed to the development of the action plan and several RVA projects including the metabolic workforce study.
- GUARD collaborative is a coalition of peak body organisations, Genetic Support Network Victoria, Genetic Alliance Australia (NSW) and Syndromes Without A Name (SWAN Australia). Mito Foundation is a member of the GUARD Consumer Advisory Group and the GUARD Mental Health Working Group.
Neurological Alliance Australia is a collective of not-for-profit organisations representing adults and children living with progressive neurological or neuro-muscular conditions or neurological disorders in Australia. The Alliance works collaboratively to identify and advocate for opportunities that will promote improved quality of life for people living with these conditions, including through improvements to the NDIS and Aged Care systems, and funding to support research.
Our advocacy priorities
Our current advocacy work covers several goals:
Our work to give Australian families access to mitochondrial donation continues as we look towards the start of the pilot program. Mitochondrial donation is an IVF technique with the potential to prevent mitochondrial disease in the next generation. We are supporting expanded access to reproductive carrier screening for severe childhood forms of mito, which can give future parents options to avoid having a child with mito.
Improving diagnosis of mito
We have worked with mito specialists to secure Medicare funding for whole genome sequencing for faster diagnosis of mito. This has recently been announced in the Federal Budget 2023.
We are working with our network of mito specialists to increase how much general practitioners know about mito and connect them to mito specialist services when they think one of their patients may have mito.
Improving life with mito
As we prepare for targeted treatments for mito to become available, Mito Foundation is working with other rare disease organisations to ensure that Australians can access new treatments through clinical trials, medicine approvals and reimbursements.
Improving health services for people with mito is a high priority. Mito Foundation has supported the development of the first Australian Patient Care Standards and will continue to work with mito specialist health professionals to improve access to high-quality care throughout Australia.
Mito Foundation also works with the mito community to improve disability, education, workplace and financial supports. We do this by contributing to reforms in these sectors to ensure that people impacted by mito have the support they need to live great lives.
Advancing research into mito
Previous submissions and projects
- 2023 National Dementia Action Plan
- 2022 Medicare listing for whole genome sequencing for diagnosing mito (2021 submission)
- 2022 Submission to discussion paper on Contemporary Assisted Reproductive Technology and Surrogacy Legislation for Western Australia
- 2022 Medicare listing for genetic carrier screening
- 2021 National Medicines Policy Review
- 2021 NDIS Home and Living Consultation
- 2020 Parliamentary Inquiry into New Drugs and Novel Technologies
- 2017 Medicare listing for genetic testing for childhood syndromes
Get In Touch
If you'd like to learn more about the foundation's policy and advocacy work or get in touch about a recent submission, please reach out to Clare Stuart, our Policy and Advocacy Manager. You can call on 1300 977 180 or email firstname.lastname@example.org.
Policy and Advocacy Manager
Clare leads Mito Foundation's work to advocate for improvements to health, disability and social support for people living with mito. She has a Masters in Public Health, has worked in policy development with NSW Ministry of Health and has managed another Australian rare disease organisation.
Clare played a key role in the establishment of Rare Voices Australia and was a member of the steering committee for the first National Strategic Action Plan for Rare Diseases. Clare's passion for improving the lives of people with mito and other rare conditions is fuelled by her experience as a sister of Lizzie, who lived with a rare genetic condition.
Originally from Sydney, Clare now lives in Orange in the Central West region of NSW. When not working for The Mito Foundation, she can often be found on the ultimate frisbee field, on her stand up paddle board or volunteering as an ethics teacher at her childrens' school.