Patient engagement

Here at The Lily Foundation, we believe that to find new treatments and a cure for mitochondrial disease, it’s really important to learn more about the lives and experiences of you – the people living with the condition.

We want to involve and strengthen the patient voice in mitochondrial research, because you’re the ones in a position to provide your own unique perspective on living with the disease every day, a perspective that allows researchers to gain a better understanding of patient needs.

There’s also an important ethical consideration to involve patients in research – the concept of ‘nothing about me without me’ means patients have a right to be involved and informed about the research that’s going on into their condition.

But, of course, we can’t do this without you! So please get involved – sign up to our medical registries, join our EPIC panel and share details of your condition to help advance scientific knowledge, improve care and develop new treatments.

This is your chance to share your story and help shape the future of mitochondrial research.