A central hub of resources has been collated to help you understand and manage mito. Here you will find practical information on a wide range of topics via fact sheets, videos, expert presentations and third party resources. Search on a specific topic or view the resources of particular relevance for newly diagnosed, medical professionals, adults or parents and children.

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Link to Advance Care Planning Video

Advance Care Planning

Video

During a Mito Connect Call, Carolyn Vaughan presented on the value of advance care planning. This included the importance of deciding who will make health decisions on your behalf and how to engage in the conversation about end of life.

Link to Grief, Loss and Bereavement Video

Grief, Loss and Bereavement

Video

During a Mito Connect Call, Wendy Liu (Specialist Grief Counsellor, Couple & Family Therapist, and Accredited Mental Health Social Worker), covered a range of topics to help understand and manage grief and loss.

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 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 Maeve's Law: The path to now and what lies ahead? Video

Maeve's Law: The path to now and what lies ahead?

Video

At a Digitial Mito Information Day, Prof David Thorburn summarised the progress on mitochondrial donation and presented other reproductive options that community members can access.

 

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 Australian Patient Care Standards Webpage

Australian Patient Care Standards

Webpage

The Australian Patient Care Standards are an important resource to guide health professionals to improve the care they provide for people impacted by mitochondrial disease (mito).

 

Link to Mitochondrial protein quality control: Keeping cells healthy Video

Mitochondrial protein quality control: Keeping cells healthy

Video

During a Mito Information Day, Meghan spoke about protein quality control and its importance to maintain healthy mitochondria.

Link to Mitochondrial Disease and Optic Neuropathy Video

Mitochondrial Disease and Optic Neuropathy

Video

Dr Kate Ahmad is a Sydney neurologist specialising in Neuro-ophthalmology and neurogenetics.  She spoke about the impact of mitochondrial eye disease and how to live well with them, focusing on inherited optic neuropathies.

Link to Q&A with Accredited Exercise Physiologists Video

Q&A with Accredited Exercise Physiologists

Video

During a Mito Connect Call,  three Accredited Exercise Physiologists who voluntarily collaborate to improve outcomes for patients with mito, answered questions from the community.

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