Research is the key to finding treatments and an eventual cure for mitochondrial disease, and we believe the real experts are the people living with the disease – the fighters, the mito heroes.
That’s why we’re launching our new Expert Patient Input Committee – in short, EPIC: an online committee made up entirely of mito heroes who will get the chance to share their experiences and have their voices heard to help shape research, clinical care and treatments.
We believe that people who live with mitochondrial diseases are the experts in their condition, and that by sharing their experiences and insights they can help researchers understand what’s really important to those living with mito and their families.
Although scientists, doctors and researchers have a lot of knowledge about mito, the one thing they don’t know is what it’s like to live with the disease. The unique knowledge our mito warriors have gained from experiencing their own care, or the care of someone close, is hugely valuable. Their input can help shape the ideas of clinicians and researchers, allowing them to ensure their work is relevant, good value for money and useful to the mito community.
There’s also an important moral aspect – those who are living with or have lost someone to mitochondrial disease have the right to be involved in research that’s taking place. Being part of EPIC gives them the opportunity to share their stories as well as have their say on projects that may be of benefit to the wider mito community.
Listening to mito patients, and understanding their feelings as they travel their mito journey, has always been at the core of what we do. If there’s one group of people who truly understand mitochondrial disease, and are in a position to influence the design and delivery of the care they receive, it’s those living with it.
That’s why we’re offering them this amazing opportunity to turn their story into something epic and help shape the future of research. We’re talking mito – are you listening?