EPIC information for researchers - The Lily Foundation
The Lily Foundation logo featuring a butterfly, hearts and an 'x' for a kiss

Fighting mito,
finding hope.

Illustrated image of group of diverse people, of different cultures and abilities, with speech bubbles above the heads

EPIC information for researchers

Man talking to a semi circle of people about ways their can shape research

EPIC, The Lily Foundation’s Expert Patient Input Committee, is designed to involve people with lived experience of mitochondrial disease, providing opportunities for patients, families, researchers and clinicians to work together to help shape mito care and research.

Most ethics boards now demand that researchers consider patient and public involvement in the development of any study. The first step to ensuring that research is truly patient-focused is asking patients what their research priorities are, and what important questions and challenges they face every day.

Our committee is open to patients and family members of those living with mitochondrial disease, as well as those who have lost loved ones to the condition. Members have expressed interest in taking part in EPIC as part of signing up to our UK Mito Patient Registry or have approached us directly with a desire to take part.

As EPIC is open to our entire Lily community across the UK, this is a virtual committee with most activities taking place online. Participants choose the projects they would like to be involved in, and researchers will need to apply to The Lily Foundation to approach the committee.

If you’re a researcher and you would like to apply to involve mitochondrial disease patients in your research, we strongly encourage you to read our EPIC researcher booklet before filling in an application form.