The Australian Patient Care Standards in practice

At the 2022 AussieMit Community Summit, Prof Carolyn Sue AM discussed the Australian Patient Care Standards for primary mitochondrial disease published in late 2021. These standards were developed by Prof Sue and a group of 21 mitochondrial healthcare providers to guide health professionals to offer the best possible care for people impacted by mito.

 

 

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Link to Mito Connect Call: Finding Quality NDIS Services & Supports Video

Mito Connect Call: Finding Quality NDIS Services & Supports

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In this Mito Connect Call, Ruth Yuthok (Mito Foundation’s NDIS Navigator) discusses finding quality NDIS services and supports.

Link to Making Mito Mighty: Finding treatments for mito Video

Making Mito Mighty: Finding treatments for mito

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At a Melbourne Mito Information Day, Cameron McKnight discussed how he has used human stem cell models of mitochondrial disease to study promising drug treatments for heart muscle cells.

Link to Transition – moving to adult health care Video

Transition – moving to adult health care

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Rachael Havrlant (Transition Care Network) spoke about the transition from paediatric care to adult care. She covered the basics and touched on the surprises people may face as they move to adult care. She also covered the difficulties children can face during the transition phase and how their families/carers can support them to have a better experience.

Link to Pathways to diagnostic testing for mito in children Video

Pathways to diagnostic testing for mito in children

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Dr Balasubramaniam spoke at a Mito Information Day on the pathways to genetic tests for children.

She delved into the barriers that families often face when considering genetic testing and gave valuable insights into what families should be aware of before making the decision to pursue genetic testing.

Link to Mito Connect Call - Peer Support Network Video

Mito Connect Call - Peer Support Network

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This Mito Connect Call introduces the Mito Foundation Peer Support Network. The network offers one-on-one support for mito community members. We know that sometimes the best support comes from someone who has similar experiences to you. Watch this recording to learn more about the Peer Support Network, including how to access it.

Link to How your feedback is improving NDIS support Video

How your feedback is improving NDIS support

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In this Mito Connect Call, Ruth Yuthok (Mito Foundation’s NDIS Navigator) introduced new web content full of valuable resources and case studies that reflect the positive impact of assistance on individual NDIS plan outcomes.

Link to Mitochondrial Genetics Video

Mitochondrial Genetics

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Michelle Cao explains the importance of genetic testing, the difference between direct-to-customer genetics tests and why your medical team may not accept their results, along with introducing the process of getting a genetic test in Tasmania.

Link to Gastrointestinal Manifestations of Mito Video

Gastrointestinal Manifestations of Mito

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Dr Christine Wools is a Melbourne-based Neurologist who works closely with the mito community. She explores the topic of mito and the gastrointestinal system – the clinical features and management of these.

Link to Your Hearing Video

Your Hearing

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Katie Tharle introduces Hearing Australia and provides an overview of what they do around the country. She also talks about hearing aids, the different kinds and options, the pros and cons of these options, and the services Hearing Australia offers.

Link to Understanding epilepsy and seizures in mito Video

Understanding epilepsy and seizures in mito

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Prof Mary Kay Koenig discusses the most common seizures found in children and adults with mito, reviews how and why seizures occur, and the treatment and precaution recommendations.