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Hearing the patient voice loud and clear at Euromit

Research

23 June 2023

June saw the arrival once again of Euromit, the leading international conference on mitochondrial diseases. And there was a clear theme running through the event’s proceedings – the growing appreciation of the patient voice.

Large group of people standing together in a room at a conference

A key date in the mito calendar, this four-day conference attended by globally renowned experts in the field of mitochondrial disease research occurs every three years. Taking place this year in Bologna, Italy, it was attended by Lily’s Head of Research, Alison, and Science & Patient Engagement Officer, Katie.

Listening to patients, and understanding their feelings as they travel their mitochondrial disease journey, has always been at the core of what we do, so it’s great to see this mindset reflected on an international platform. If there’s one group of people who truly understand mitochondrial disease, its symptoms and effects, and are in a position to influence the design and delivery of the care they receive, it’s those living with it.

Indeed, representing the patient was top of the agenda before Euromit had even started, at the AGM of the International Mito Patients. The annual get-together of this global umbrella organisation provides an opportunity for mitochondrial disease patient organisations from around the world to meet, learn about one another’s work and plan the future direction of the committee.

Alongside other mitochondrial disease groups at the IMP, the Lily team were able to raise awareness of the patient organisations we support, and had the opportunity to chat and exchange ideas with clinicians and patients from countries such as Poland and Romania, where currently there are no formal patient support charities.

There was a healthy mix of new and established organisations present, and rather than taking place independently of Euromit, this year the IMP were given a five-minute slot at the conference to address the entire congress. What a fantastic opportunity this was for the group’s chair, Kira Mann, to talk about the global patient organisations it represents, and it provided a springboard for all sorts of connections to flourish over the course of the next few days.

Man standing behind a lectern presenting with a large screen behind

And throughout Euromit itself, it was clear that the theme at the top of the agenda was the importance of the patient voice, from Sir Doug Turnbull’s keynote lecture, which discussed the importance of patient organisations with a focus on the work The Lily Foundation have done, to the dedicated patient session that took place on the Wednesday afternoon, which even had a section called ‘Ask the Mito Doc’.

Also telling was the large presence at the conference from the pharmaceutical industries. The landscape has been changing for some time now, and pharma are beginning to appreciate the importance of the patient voice in shaping drug development going forward. Because it’s the input from mitochondrial disease patients that will really make a difference when it comes to designing new drugs and treatments.

The Lily team were, understandably, buzzing with excitement and new information as they headed home. Euromit saw an incredible 821 people in attendance from 38 countries – fantastic to see mitochondrial disease really taking the global stage. And what a fabulous opportunity for everyone there to revisit existing connections and indeed make new ones, strengthening the global mito community – and giving mitochondrial disease patients hope.

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