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Stay connected with the mitochondrial disease community

Discover the latest updates from The Lily Foundation and the wider mitochondrial disease community. You’ll find news, personal stories, research updates and insights into the vital support we provide for those affected by mitochondrial disease.

From inspiring stories of families living with mitochondrial disease to breakthroughs in mito research and much more, there’s plenty going on. Sign up to our newsletters and follow us on social media to stay informed and connected – don’t miss a thing!

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Research
13 November 2019

NHS publishes physiotherapy guidance for mito patients

Physiotherapists can now access guidance on how to treat people with mitochondrial diseases, thanks to an NHS-led project involving The Lily Foundation.

Research
11 November 2019

Research Focus: Mitochondrial Gene Therapy

Mitochondrial gene editing is a promising therapeutic technology in the field of mitochondrial disease research. The robustness of this technology will allow for it to be used as a therapeutic technique for a wide variety of diseases caused by mutations to the mitochondrial genome.

Research
16 October 2019

Research focus: enzyme replacement therapy

In the first of a new series of quick guides to Lily-funded research projects in the search for mitochondrial disease therapies, we look at an innovative treatment for MNGIE syndrome that's making waves internationally.

Research Awareness
4 October 2019

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

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.

Research Awareness
12 September 2019

Lily Foundation unites with global charities to give hope to Leigh syndrome patients

The Lily Foundation is proud to be a member of the Leigh Syndrome International Consortium, a newly formed group of international rare disease charities committed to improving clinical care for Leigh Syndrome patients around the world.

Research
28 May 2019

Lily announces partnership with Wellcome Centre for Mitochondrial Research

The Lily Foundation and the Wellcome Centre for Mitochondrial Research (WCMR) have announced a strategic partnership to improve the lives of people affected by mitochondrial disease.

Research
14 May 2019

PREFER: Patient preferences in new drug research

Input from patients and caregivers has been helping to guide the development of potential treatments for mitochondrial disease as part of the ongoing PREFER study. Dr Cecilia Jimenez-Moreno, the PREFER clinical case study lead based at the Wellcome Centre for Mitochondrial Research at Newcastle University, tells us what this means and what happens next.

Research
30 April 2019

Q&A with Dr Alex Dorenbaum

As trials begin for a new medicine to treat mitochondrial myopathy, we talk to Dr Alex Dorenbaum, Chief Medical Officer of Reneo Pharmaceuticals, about his hopes for the drug and why his company is working with The Lily Foundation.

Research
17 April 2019

Prof Sir Doug Turnbull joins likes of Newton and Einstein as Fellow of the Royal Society

Prof Sir Doug Turnbull, Director of the Wellcome Centre for Mitochondrial Research and a long-serving member of The Lily Foundation Medical Board, has been named a Fellow of the Royal Society.

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