Mito Medical Network (MMN) was formed by a group of leading medical practitioners, researchers and sufferers of mitochondrial disease.
MMN is acutely aware that, in most patients, mitochondrial disease is a multi-system disorder, primarily affecting the muscles, nerves and other major systems, such as brain, heart, liver, bowel, kidneys, eyes and hearing. Its presentation is extremely variable, hence the nicknames of ‘notorious masquerader’ and ‘great mimicker’. Many sufferers attend numerous health services over years before a true diagnosis is revealed, if at all. This is a “complex and burdensome diagnostic odyssey” (Grier et al 2018).
For these reasons, mitochondrial disease has huge complexities with many variabilities in both phenotypical and genotypical presentations, lack of standardised diagnostic investigations, the translation and interpretation of variants, prognostic indicators and management practices. All of these complexities contribute to a general lack of knowledge, awareness and acceptance of mitochondrial disease in mainstream and general practice medicine.
It was timely to form MMN as the professional governing medical body to unite clinical practitioners with the common goal to advance disease recognition and care for the growing Australian ‘mito community’.