Lily to bring patient voice to world's biggest mito conference

4 October 2019

The Lily Foundation is proud to announce its partnership with Euromit 2020, the world's largest ever international conference on mitochondrial disease, which will be held in Newcastle next summer. 

From 14th-17th of June, an estimated 600 delegates, including leading clinicians, researchers and scientists in the field, will convene at the Sage Gateshead on the banks of the River Tyne. 28 speakers from nine different countries have been confirmed. The common goal of everyone there will be to improve understanding of mitochondrial disease across the globe, and advance efforts towards finding a cure.

As the event's official charity partner, The Lily Foundation has been invited to provide the 'patient voice' of the conference. We'll be running a dedicated patient day alongside the main conference, the aim being to provide a forum where patients and affected families can meet with specialists, discuss how mito has personally impacted them, and learn about any new research or treatments. 

Patients and their families are ultimately our best source of knowledge about how mitochondrial disease impacts lives."In addition to the patient day, we'll be presenting a series of video case studies throughout the conference. These videos will be screened between talks to show delegates the different ways that mitochondrial disease impacts lives, and the day-to-day obstacles it presents. For many of the scientists and researchers attending the conference, this will be a rare opportunity to learn first hand about the varied and complex ways that mito can affect people's lives. 

Alison Maguire, Head of Research and Finance at The Lily Foundation, said: 

"We're delighted to be a partner of Euromit 2020, and very grateful to the conference's organising committee for giving patients such a valuable platform to have their stories heard. For people struggling to live with the terrible impact of mitochondrial disease every day, this is a unique opportunity to share their experiences directly with the doctors and scientists working to help them. We see this as important and positive step towards improving the lives of patients and their families."

Dr Julie Murphy, Engagement Manager at the Wellcome Centre for Mitochondrial Research at Newcastle University, which is co-hosting the event with Newcastle upon Tyne Hospitals Trust, said: 

"Euromit 2020 looks set to be the largest ever, which is a positive sign of how the global conversation about mitochondrial disease continues to grow. It's vital that we include patient perspectives in that conversation, and having The Lily Foundation as our partner charity 
allows us to do that. Patients and their families are ultimately our best source of knowledge about how mitochondrial disease impacts lives. By bringing patients together with specialist doctors and researchers, we can help to ensure best practice in future medical research, new drug development and clinical care."

The patient meeting will be held on the 16th June, hosted by The Lily Foundation. Up to 150 patients and families from across the world are expected to attend, including those from other International Mito Patients (IMP) member organisations. 

Have your say

It's important to us that patients and families are able to contribute to the discussion agenda at the patient meeting. If you've been affected by mitochondrial disease and have a topic you'd like considered, we'd like to hear from you. For updates about how to contribute follow Euromit 2020 on Facebook or Twitter.