Be part of something EPIC - The Lily Foundation
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Be part of something EPIC

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 – you. You’re the fighters, you’re the mito heroes – and now’s your chance to be part of something EPIC.

What is EPIC?

EPIC stands for the Expert Patient Input Committee. It’s a committee we’re putting together that will be made up of people who are affected by mitochondrial diseases and who are willing to share their experiences to help shape research, clinical care and treatments.

Why is it important to have an Expert Patient Input Committee?

We believe that people who live with mitochondrial disease 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 mitochondrial disease, the one thing they don’t know is what it’s like to live with the condition. The unique knowledge that you’ve gained from experiencing your own care, or the care of someone close to you, is hugely valuable. Your input can help shape the ideas of clinicians and researchers, allowing them to ensure that their work is relevant, good value for money and useful to the mitochondrial disease community.

There’s also an important moral aspect – as someone who lives with mitochondrial disease, you have the right to be involved in the research into the condition that’s happening. Being part of EPIC gives you the opportunity to share your story as well as have your say on projects that may be of benefit to the wider mitochondrial disease community. It might even allow you to learn new skills or have new experiences.

Who can take part?

Anyone who has a confirmed genetic diagnosis of mitochondrial disease, as well as people who are parents or carers of someone with mito and those who have lost a loved one to the condition.

What will being part of EPIC involve?

Being part of EPIC will give you the chance to take part in lots of different projects; this may involve sharing your own experiences of living with mitochondrial disease or testing out new registries and clinical databases before they’re opened to the wider patient community. You may be approached because researchers or drug companies are looking for patients to give their input into a new research idea or clinical trial design, or to check over documents to ensure they’re suitable to be given to patients.

There are lots of ways to be involved, and it’s up to you to decide how much time you would like to commit to the project. You can decide which elements of the project you’re most interested in and how often you’d like to be contacted to take part. Being part of EPIC is completely voluntary and you can always change your mind if you decide it’s not for you after all.

It’s important to know that being part of EPIC is not the same as taking part in a clinical trial. EPIC isn’t about taking part in a study to test a new treatment or care option. Instead, you’ll be using your experience to direct the planning and delivery of research, clinical care and treatments of people with mitochondrial disease.

How do I take part?

If you’ve already created a Lily account and joined the UK Mito Patient Registry, you can access your account and be part of EPIC. If you haven’t yet done this, please create an account and sign up for EPIC via the registry. And you can find out more about being involved in our committee by downloading our EPIC patient leaflet.

I’m a researcher – how do I get involved?

If you’re a researcher and you’d like to approach our EPIC committee for involvement in your work, you can download our EPIC researcher booklet. You’ll find lots more information in there, as well as an application form. We ask you to please read the leaflet in full before submitting any applications.

Have your say

Sign up today to our UK Mito Patient Registry and make your experiences count in the search for effective treatments and a cure for mitochondrial disease.