There is absolutely nothing as far as treatment goes for my son and hundreds of other people in Australia for mitochondrial disease. All we have is vitamin supplements to treat a whole complicated area of health conditions associated with mitochondrial disease and that something needs to be done about it. Participant 50

Yes. I have been very grateful for the expertise of the medical staff and their compassion. We understand they are trying to do whatever they can. There’s nothing else really that they can do at this point in time. Participant 48

I’d also say there’s got to be a support function after you’ve been diagnosed, like where people can go and get proper information, but also being updated with what can help and also where you can actually have health professionals or specialists in the area given more research to try and combat it. Participant 15

If you get a healthcare plan, you get five free visits with the physio in a year. Five isn’t enough. Yes, more affordable physical therapies please. Participant 4

I think some of the small things have actually been the most useful like before I was diagnosed, when my rheumatologist said, “I don’t know what you have. I’m going to refer you to a neurologist.” That referral system, that made a very huge difference to my life. Participant 5