Driving Change

Mito Foundation has continued to advocate for people living with mitochondrial disease as significant changes to the NDIS are implemented.

We made joint submissions to this government inquiry to ensure the needs of people with mito are recognised and that access to essential disability supports is protected.

Our advocacy highlighted the importance of fair, accessible and sustainable supports for people living with rare and complex conditions.

Read more about our recent NDIS advocacy and submissions in this news update.

Read the joint submissions:

• Neurological Alliance Australia.
• Genetic Alliance Australia.

Mito Foundation worked with Genetic Alliance Australia on this submission to the Medical Services Advisory Committee (MSAC). MSAC helps decide which health services should be funded through Medicare. 

MSAC is considering whether Medicare should fund diagnostic genomic testing for some pregnancies. These are pregnancies where a scan has found significant fetal structural anomalies. This testing can look for genetic causes that may not be found through current publicly funded tests. 

We supported public funding for this testing. We said families should be able to get this testing no matter where they live or how much money they have. 

We told MSAC that: 

• current publicly funded testing does not find all genetic causes of fetal anomalies 

• some rare and genetic conditions may only be found through genomic testing 

• pregnancy is a time-sensitive situation, and families may need information quickly 

• a diagnosis can help families understand what is happening and plan better 

• a diagnosis can also help with future family planning and understanding recurrence risk 

• even when testing does not provide a diagnosis, it may still help families by narrowing uncertainty 

• genetic counselling and support to make informed decisions are essential parts of care. 

The submission was supported by organisations supporting families with rare, genetic and undiagnosed conditions. 

You can read our submission here. 

Mito Foundation made a submission to the Pharmaceutical Benefits Advisory Committee (PBAC). This committee helps decide which medicines and treatments should be cheaper in Australia. The committee is considering nutrition products for ECHS1 deficiency in July 2026. ECHS1 deficiency is a very rare type of mito. 

We said that families living with ECHS1 deficiency already manage a lot. Easier access to these products would help children get the care their health team recommends. 

Our submission highlighted: 

• what ECHS1 deficiency is, and how it affects the body 

• the daily impacts for children and families living with ECHS1 deficiency 

• why specialised nutrition products are important for people with ECHS1 deficiency 

• why these products need to be affordable and easy to access 

• why specialists need flexibility to choose the right product for each person.  

You can read our submission here.  

Mito Foundation made a submission to the Senate inquiry into epilepsy in Australia. Our submission highlighted the link between epilepsy and mito, and the need for better diagnosis, care and emergency support. 

Our submission included stories from the mito community about: 

• delayed diagnosis,  

• dismissed symptoms,  

• complex seizure management and  

• the vital role of carers. 

We asked the Committee to: 

• recognise the link between epilepsy and rare diseases, including mito 

• improve access to timely genetic testing, especially for young children with epilepsy 

• help health professionals recognise when epilepsy may be a sign of mito or another genetic condition 

• invest in multidisciplinary mito care led by neurology and metabolic medicine specialists 

• include mental health and peer support in epilepsy care 

• listen to patients, parents and carers as experts in their own care 

• improve emergency care for people with complex epilepsy and mito. 

You can read the submission here.

Mito Foundation provided feedback to the Australian Department of Health, Disability and Ageing. This department is writing rules for a new way to plan NDIS supports and budgets. This includes a new way to understanding the needs of NDIS participants.  

The new planning system will affect whether Australians living with mito receive the supports they need through the NDIS. 

In our response, we recommended that the new planning system: 

• Recognises that people may have more than one type of disability. The NDIS calls these 'impairments'

• Can adapt when the person’s support needs increase in the future 

• Includes therapy that helps people maintain their skills and abilities as mito progresses 

• Is developed by people who understand mito. 

You can read the full response, including all of our recommendations, here. 

Our input was based on stories shared by the mito community, including people who used our NDIS Navigator Service.  

Mito Foundation made a submission to the MELAS Patient-Focused Drug Development (PFDD) meeting.  MitoAction (USA) hosted this meeting with international advocacy partners. 

PFDD meetings let families share what matters to them with the people making decisions about care and treatments. Following this meeting, this input is brought together in a report. Regulators, clinicians, researchers, and industry worldwide read this report. This helps them decide about future research, treatments, and regulations.  

Mito Foundation wanted to include Australian stories in this important process. We drew on insights from the Mito Stories Project. The submission included:  

• Key themes reflecting common experiences of Australians with MELAS 

• Individual anonymised stories to show real-world impact. 

We thank everyone who contributed their stories. You can read our submission here.  

The Navigator Co-design Working Group is run by the National Disability Insurance Agency (the NDIA). The Working Group is finding out how a navigator can best support people with disability. The Working Group asked Mito Foundation to help them learn what works well. 

We chose to take part because we know our NDIS Navigator Service helps people. Our evaluation shows that the service improves access to disability supports. It also helps people feel more confident and better informed about the NDIS. 

We prepared a report that shares key findings and recommendations from our service. This is one way that we can help to make sure the new navigator service works well for Australians living with mito. 

You can read the full report here. 

Mito Foundation made a submission to the NDIS EAC in November 2025. The EAC was asking for community input on the following supports: 

• Active passive trainers 

• Assistance animals for autistic people or people with intellectual disability 

• Psychiatric assistance dogs 

• Seizure alert dogs 

• Exercise physiology 

• Smart home appliances. 

Mito Foundation provided evidence on the mito community’s behalf for two of these supports: 

1. Exercise Physiology (EP): We told the EAC how EP can help people with mito manage their symptoms. We asked the EAC to include EP support in all NDIS plans for people with mito.  
2. Smart home appliances: We gave the EAC examples of different appliances that can help the mito community. We told the EAC that the NDIS should fund regular smart appliances because they can still make life easier for people with disability. We also highlighted how smart home appliances can reduce the need for paid support workers. 

You can read our submission here.  

In August 2025, the government announced a $2 billion investment in the Thriving Kids initiative. This program aims to support children under 8 with mild to moderate developmental delay and autism. In our submission, Mito Foundation asked the Committee to ensure that: 

1. Children diagnosed with mito can still access the NDIS as a first option. Mito can be unpredictable, and children’s symptoms can worsen quickly. 
2. Transitions between Thriving Kids and the NDIS are smooth and coordinated, with no gaps in funding and minimal disruption to support providers when a child’s needs change. 

You can read our submission here. 

Mito Foundation made a submission to this Select Committee in August 2025. The committee was inquiring into the fertility options and assisted reproductive technologies (ART) in New South Wales. We highlighted the importance of ART to the committee, including mitochondrial donation. We made 5 recommendations to the committee:  

1. Recognise the importance of ART in the lives of families impacted by mito and other rare conditions.
2. Take on board the Coroner’s Project’s call to increase genetic testing in postmortem examinations of young people. This may guide families to make informed family planning decisions in the future.   
3. Prioritise actions to improve access to ART. This especially includes addressing high out of pocket costs and issues faced by families living in regional, rural and remote areas.
4. Support families to access mitochondrial donation through the mitoHOPE pilot program.
5. Monitor mitochondrial donation and make mitochondrial donation available once the pilot program ends. 

Read the submission here.

We made a submission to ask for Medicare funding for CGM systems for people with mito-related diabetes. In our submission, we highlighted that: 

• Mito is linked to an increased risk of diabetes.

• Mito-related diabetes is often not funded under the National Diabetes Services Scheme (NDSS) for CGM systems. 

• Many people with mito-related diabetes cannot pay out-of-pocket for CGM systems.

• CGM has a positive impact on the well-being of people living with mito-related diabetes. 

You can read our submission here.  

Mito Foundation contacted election candidates ahead of the 2025 federal elections. We asked candidates to commit to support the mito community by: 

• Providing funding to address the challenges of dietary supplements for mito.

• Ensuring equal access to diabetes technologies for people with mito-related diabetes.

• Maintaining support for the mitoHOPE program.

• Supporting clinical trials for rare diseases in Australia. 

• Banning the use of genetic tests in life insurance as soon as possible. 

• Expanding reproductive carrier screening.  

You can read the election commitments here. 

We received responses from 20 representatives, including a response from the Australian Greens supporting Mito Foundation’s work. The Government has since announced increased support for clinical trials in Australia and has drafted legislation that bans the use of genetic tests in life insurance. 

Mito Foundation joined 106 other organisations in making a joint submission to the Treasury. The submission provided feedback on the design of laws banning the use of genetic test results for life insurance. The joint submission recommended that the law should: 

• Stop insurers asking for, collecting, or sharing genetic test results.

• Stop insurers from using genetic test results to decide coverage or rates.

• Require insurers to inform applications of the law.

• Allow the definition of genetic testing to be flexible and responsive. 

• Have clear guidance for everyone, including how to make complaints. 

• Require insurers to destroy genetic data that is no longer needed. 

You can read the joint submission here. 

Mito Foundation made a submission to the Department of Social Services consultation on Foundational disability supports. These supports sit outside the NDIS. They focus on general supports like information, peer support and capacity building. They also include supports for children under 9 with developmental concerns or disability. In our submission we asked the department to: 

• Ensure people that don't have access to the NDIS have timely access to support, 

• Learn from services like our NDIS Navigator Service to support best practice, 

• Ensure services cater to the needs of people with fatigue challenges, 

• Improve equitable access to allied health services.  

Our input was informed by stories shared by the mito community, including through our NDIS Navigator Service.  

Read Mito Foundation’s submission here.  

The summary of the consultation suggests the Department has a better understanding of the important role that non-government organisations play. This includes organisations focussed on a specific conditions, such as Mito Foundation. Rare diseases and disabilities were mentioned in the consultation summary, particularly the value of the navigation services that they provide. We also welcome the recognition of the needs of people living with energy-limitations. Since this consultation, the department committed $2 billion to Thriving Kids. This program will support children under 8 with mild to moderate developmental delay and autism. The NDIS will still support children with permanent and significant disability. Mito Foundation will keep engaging on this topic as work on Foundational supports continues. 

In late 2022, Mito Foundation conducted a small research study about dietary supplements. The study asked community members questions about: 

• Where they get information and advice about supplements.

• How decisions about whether or not to take supplements are made. 

• How they pay for supplements and how this affects them.

• Whether they can find supplements easily when they need or want them.  

Based on what community members told us, we made some recommendations for Mito Foundation and others in this report:  

1. Mito Foundation should work collaboratively with health professionals to address challenges with dietary supplements. 
2. Develop online resources for the mito community. 
3. Fund more research on dietary supplements for mito.  
4. Advocate for more supplements to be funded by the government to reduce out of pocket costs.  
5. Conduct more research for how people with mito use supplements.
6. Collaborate with other national and international organisations. 

The dietary supplements working group was established by Mito Foundation in 2024. Read the report here.

Mito Foundation has published online resources focussed on dietary supplements on our website. 

Mito Foundation submitted an application to the National Health and Medical Research Council (NHMRC) to ask them to provide funding on this topic. You can read this application here. 

We have shared this report with Australia’s Nutrition Products Working Party (NPWP). The NPWP has provided advice on how the government could fund some dietary supplements for mito.

This report has also been used in the pre-election commitments, which were shared with almost 170 politicians.   

Mito Foundation made a submission to the Department of Social Services consultation on the draft lists of NDIS supports. These lists will define what the NDIS will and won’t fund as a part of changes to the NDIS Act 2013. Our submission highlighted overall and specific issues that will impact Australians with disabilities related to mito. These included issues related to funding of: 

• Allied health therapies.

• Vision and hearing supports.

• Transport.

• Dietary supplements.

• Support for families. 

Our input was informed by stories shared by the mito community, including through our NDIS Navigator Service. 

Read Mito Foundation’s submission here.

In October 2024, the NDIS support lists were released. These lists were updated to include more vision- and hearing-related supports and be clearer on other supports. Mito Foundation was also invited to provide feedback on new guidelines for therapy supports. These guidelines will help NDIS participants access allied health supports through the NDIS. 

1. Input to the Neurological Alliance Australia’s (NAA) Submission:  

As a member organisation, Mito Foundation was asked to provide input on NAA’s submission to the inquiry on the NDIS amendment bill in May 2024. We made sure the submission addressed the major concerns of the mito community. Our input was informed by stories shared by the mito community, including through our NDIS Navigator Service. The final recommendations to the committees were: 

• Ensure that the new NDIS rules are designed and implemented after consulting the disability community.

• Publish the draft rules as soon as possible. 

• Legislate the fundamental aspects of NDIS. These include those related to access, assessment, supports and early intervention pathways.  

• Acknowledge how complex progressive conditions are in assessment processes. People should be able to ask for provisions anticipating future needs. 

• Make exemptions to blanket rules for supports based on peoples' needs and circumstances. 

• Allow people to make changes to their plans as needed, without delays. 

• Clarify who will be responsible for conducting assessments requested by the NDIA. Give people more time to build their new plans 

• Set up a specialised NDIA workforce that can cater to clients with rare and progressive conditions. 

Read NAA’s submission here.  

2. Input to Rare Voices Australia’s (RVA) Submission 

As a partner organisation, Mito Foundation provided input on RVA’s submission to the inquiry on the NDIS amendment bill in May 2024. We made sure the submission addressed the major concerns of the mito community. Our input was informed by stories shared by the mito community, including through our NDIS Navigator Service. The submission emphasised to the committee: 

• Any changes to the NDIS should protect the rights and needs of people with disabilities. 

• The importance of working together with the disability sector, including RVA, for planning. 

• The need for more parliamentary oversight and better government transparency and accountability. 

Read RVA’s submission here.  

3. Input to Rare Voices Australia’s (RVA) Submission to the NDIS Provider and Worker Registration Taskforce 

As a partner organisation, Mito Foundation attended an RVA workshop in April 2024. This workshop aimed to inform the Government's new rules for NDIS providers and workers. Mito Foundation made sure that the major points of concern for the mito community were raised in this workshop. Our input was informed by stories shared by the mito community, including through our NDIS Navigator Service. The final recommendations made to the Taskforce were to: 

• Make sure workers have the right skills and training to give good support.

• Make governance better for stronger oversight and accountability.

• Set up strong systems to check the quality of care and support. 

• Create rules that match the specific risks of different supports and providers. 

• Ensure any changes to the registration process protect the rights of people with disabilities. 

• Let people with disabilities choose their own providers and workers. 

• Make sure changes do not stop people from accessing their known and trusted providers or workers.  

Read RVA’s submission here.  

In 2024, the Department of Health and Aged Care led a review of the National Strategic Framework for Chronic Conditions. This Framework is the overarching policy for chronic conditions in Australia. It aims to help Australians live healthier lives. As part of this review, the Department asked for feedback on how useful the Framework has been. 

Mito Foundation provided feedback on the usefulness of this Framework for rare diseases like mito in April 2024. We told the Department that the Framework overlooks rare chronic conditions like mito. People with rare chronic conditions must be recognised as a priority group in future policy development. We told the Department the Framework's Vision needed to be updated to include:   

• Timely detection and diagnosis. 

• Access to emerging treatment and management options for chronic conditions like mito.  

We shared the key issues that most impact the health of our community members. These included the barriers to health care access that many people with mito face. We asked for more efficient data collection. This would allow the Department to plan and deliver better health services. We also supported better care coordination for patients and their families. This included care across different systems, including primary and tertiary health systems, DSS and the NDIA. We said that state, territory and Commonwealth government coordination was essential for this. 

Read our submission here.  

In 2024, the Australian Government reviewed how it funds new health technologies. Health technologies can include tools, devices, and medicines that help improve health and well-being. In February 2024, we supported some changes that will benefit the mito community. We asked the Government to make sure that: 

• Everyone can get access to health technologies on time. 

• People can ask for health technologies to be funded. 

• Cost-effectiveness is not the only consideration for deciding whether to fund a health technology. 

Following this, we also gave feedback to the Co-design Working Group. This group wanted to make sure consumer opinions are included sooner when listing new medicines. 

If you would like to learn more about this submission, contact us at advocacy@mito.org.au. 

In January 2024, we supported a total ban on using genetic test results for life insurance. This ban is important because getting a genetic test should not affect anyone’s life insurance application. If passed, this ban will mean that insurance providers will not be able to ask for your genetic test results for any reason. But you will still be able to show your negative test results to prove that you are not at risk.  

Read our submission here. 

In September 2024, the government announced a total ban on using genetic test results for life insurance.  

In 2023, the government wanted to hear from the public about:  

• What causes diabetes in Australia.

•  New ways to prevent, find and treat diabetes in Australia and other countries. 

•  How diabetes affects Australia's health and economy.

•  The relation between diabetes and obesity. 

•  How well the Australian government is doing at stopping, finding and treating diabetes.    

In our submission, we highlighted the Australian mito community's challenges related to diabetes:  

• We asked for a review of the current rules for funded glucose monitoring for adults with diabetes related to genetic conditions. Everyone should have a fair chance to use this important tool.

• We recommended that Australia should improve research into how genes can cause diabetes. These should include genes in the mitochondrial DNA. 

• We asked the government to consider the mito community to when making changes to improve health care for people with diabetes. This means making sure that doctors can recognise underlying genetic conditions like mito. 

Read our submission here. 

In January 2023, we made a submission highlighting the importance of improving recognition of dementia in mito. We asked the government to recognise dementia at all ages. We also asked for guaranteed access to dementia care across all ages and backgrounds. We urged for the recognition of people with conditions like mito to as a priority population. We highlighted the changes needed to improve dementia care for the Australian mito community: 

• Efforts to reduce stigma.

• Improve diagnostic services, including through integration with genomic medicine. 

• Better trained workforce. 

We also endorsed the following asks from Childhood Dementia Initiative’s submission: 

• Better data collection and reporting. 

• Reducing risk of dementia through genetic screening programs. 

• Ensuring existing services are suitable for children with dementia. 

• Better care coordination to ensure families can access specialist services when they need them. 

• Better trained workforce. 

Read our submission here. 

We made two submissions in 2021 and 2022 to ask for Medicare funding for Whole Genome Sequencing (WGS) for diagnosing mito. We told the committee that: 

• Not every Australian was able to access genomic testing. 

• It was important to fund WGS as it was the best test for diagnosing mito. 

• WGS will allow people to avoid complex and risky clinical tests. 

• Getting a genomic diagnosis leads to better health outcomes for the mito community. 

• There is a significant ‘value of knowing’ in genomic diagnosis. 

• More genomic diagnosis will support research in mito. 

• The mito community experiences minimal harms from diagnostic genomic testing. 

Read our submissions here (2021) and here (2022). 

This work helped to secure Medicare funding for whole genome sequencing for diagnosing mito. Read more about this achievement in our news article. 

In October 2022, we made a submission to ask for Medicare funding for genetic counselling services. We stressed how important these services are for the mito community. We told the committee the many challenges mito community members have accessing these services. We also told the committee that demand for genetic counselling is increasing. Medicare funding for these services would increase supply outside of public settings. We asked the government to work together to improve access to these services.   

Read our submission here.