This was a study day mostly attended by professionals who work with mitochondrial disease patients, so those present already had some knowledge of the disease, however it was a fantastic opportunity for us to represent the patient voice and enlighten everyone about the patient support services we offer.
Our Head of Research, Alison, and Science & Patient Engagement Officer, Katie, both bravely battled through Storm Ciarán to represent team Lily. During their talk the pair focused specifically on how The Lily Foundation work to support not just patients but also the professionals involved in delivering care. Because by developing relationships with NHS teams, we can ensure that every mitochondrial disease patient and family affected is in the loop about the services we offer.
As well as hearing from us, those in attendance were also able to listen to experts in the field such as Prof Shamima Rahman and Prof Bobby McFarland, while several junior medics presented case reports, giving those involved the opportunity to get invaluable input from these mitochondrial disease specialists about how to manage patient care going forward.
And our influence was certainly felt throughout the day’s proceedings, with much of the research talked about either funded or supported in some way by us. From using our website and social channels to share details of clinical trials patients can get involved in, to championing patient engagement opportunities, to our very own annual research grant call, it was clear that what we’re doing really is having an impact.
Specific Lily projects on the agenda included the TRANSFORM study, the Leigh Syndrome Roadmap Project, the new Precision Diagnostics Project and patient engagement initiatives including our newly launched EPIC panel. All illustrating the crucial role that patient organisations like ours are playing in pushing forward mitochondrial research and connecting researchers to patients and the public.
Dr Thiloka Ratnaike, Academic Clinical Lecturer at the University of Cambridge, expressed her appreciation of our work on X (formerly Twitter) afterwards: “Great to see more of the @4LilyFoundation services that clinicians can signpost families to! Also very excited to learn more about EPIC, great initiative to get patient engagement into the centre of our work.”
As we said, we’re always happy to hit the road and spread the Lily word. Because raising awareness raises funds, funds equal research, and as we all know, research is the surest way we’ll get closer to finding treatments and a cure for mitochondrial disease.
If you’re planning a study day or patient event and you’d like us to come and talk about our work, please email [email protected].