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Lily Foundation co-hosts Patient Information Days for adults affected by mito

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3 December 2018

The Lily Foundation has continued its focus on improving services for adults affected by mitochondrial disease by co-hosting two very successful Patient Information Days (PIDs).

The events, which took place in Oxford and London, aimed to increase awareness of the range of services offered by the charity, while also providing an informal networking opportunity for those affected by the disease.

The venue for the Oxford PID was John Radcliffe Hospital, home to the NHS Highly Specialised Services for Rare Mitochondrial Disorders, while the London event was held at The Wellcome Collection, in partnership with University College London's Centre for Neuromuscular Diseases.  

Lily staff set up information stands at each event, met with patients, and gave talks about the charity and the service it provides. The Foundation also sponsored a drinks reception after the London event, which proved very popular with patients who rarely have the chance to meet and socialise with others in their situation.

"Patient information days are a vital service, and a way for us to reach out to people who have been diagnosed with a mitochondrial condition," said Alison Maguire, Head of Research and Finance at The Lily Foundation. "Living with a very serious and complex rare disease like mito can be frightening and isolating, so it's essential to provide ways for patients to stay informed and connected. We're very proud to be working with our partners in Oxford and London to help make these events happen."

Dr Robert Pitceathly, Consultant Neurologist at UCL and a member of The Lily Foundation Medical Board, praised the charity's commitment to improving services for adult mito patients.

"We are extremely excited by The Lily Foundation's involvement in adult support services for mitochondrial diseases, given the huge potential benefits this has for our patients." he said. "The charity's support enabled us to host the event at the Wellcome Collection for the first time, and the breakout sessions we were able to provide in the venue were very well received. This is just one example of the positive impact The Lily Foundation is having on our adult mitochondrial disease patients."

Patient Information Days for adult mito patients are currently held once a year in London, Newcastle and Oxford. For more information email [email protected].

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