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Volunteer Program
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Sponsor Program
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Charity Fund
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Ongoing Causes
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$12,134 Donated
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$445 Donated
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$4,452 Donated
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$10,334 Donated
Become a Volunteer Today
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We’ve Raised over $400,000
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Helping Children All Over the World
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Bringing the medical community together to advance care for mito patients
The Mito Medical Network is a newly formed professional body for all specialists working in the area of mitochondrial disease. Our network includes other medical practitioners, clinical researchers, nurses, allied health and other healthcare professionals. By collaborating and unifying with all those who manage mitochondrial patients nationally, we strive to advance their daily medical care.
EXCITING NEWS regarding Mito Diagnostics
[see also https://www.mq.edu.au/macquarie-business-school/news/genimpact-success-for-mitochondrial-disease]
There is wonderful news for patients with mitochondrial diseases, their families, carers and the medical community. The Medical Services Advisory Committee (MSAC) for The Department of Health and Aged Care has now published the MSAC Application 1675 Public Summary Document, supporting the use of genomic sequencing for the diagnosis of mitochondrial disease.
The use of genomic sequencing is not only essential to confirming a mitochondrial disease diagnosis, but “pivotal in the advancement of patient care and management”. As the document states, “an earlier and definitive genetic diagnosis will alleviate much of the patient stress experienced during the MD diagnostic odyssey”, allowing “for more targeted management pathways, avoid inappropriate treatments and investigations that can be both costly and potentially harmful, inform reproductive planning, provide greater access to services and clinical trials, and improvements in quality of life for patients and carers”.
The MitoMedicalNetwork (Dr Karen Crawley), SydneyUni (Kolling Institute) team at RNSH (Royal North Shore Hospital), and the GenIMPACT (Centre for Economic Impacts of Genomic Medicine) team at Macquarie University, and The Children’s Hospital, Westmead worked tirelessly on this application over the last two years. This is an important outcome for patients building directly on the collaborative research program between Kolling-RNSH (Professor Carolyn Sue), GenIMPACT, Macquarie University (Professor Deborah Schofield, and A/Professor Rupendra Shrestha), and The Children’s Hospital, Westmead (Dr Shanti Balasubramaniam).
Medical Services Advisory Committing official website announcement can be see at: http://msac.gov.au/internet/msac/publishing.nsf/content/1675-public.
What We Do
Advancing the clinical management of the mito community is paramount to our purpose, vision and goals. We aim to achieve this through increasing medical awareness, education, standards and clinical research networking, whilst advocating to all key stakeholders in the patient’s medical care.
The Need
Although mitochondrial disease was first conceptualised around 1960, its clinical, diagnostic, and genetic complexities has markedly hindered our understanding of the illness. Due to ill-defined symptoms, diagnostic odysseys, complex diagnoses and a void of treatment options, the care of the mitochondrial patient has evolved into a fragmented array of management plans. To advance patient care, the time has come to integrate mitochondrial management nationally through a holistic and unified approach.
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More updates coming soon!
Visit again in the next few months to see the latest content updates. If you have any specific ideas to advance the care of mito patients, please contact us with the form below.
Welcome
Welcome to the Mito Medical Network ! As we develop and grow the network, we look forward to working with health professionals across Australia, interested in the care of mitochondrial patients. Our passion is to advance patient care, through the optimisation of best...
Get in Touch. Get Involved.
To help establish our Mito Medical Network, we would love to hear from healthcare professionals supporting the mito community.
Call Us
+6146 000 74 33
Correspondence
PO Box 930
Miranda NSW 2228