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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
23 September 2021

Innovative Licensing and Access Pathway will smooth approval process for rare disease medicines

The Lily Foundation is actively representing the interests of mito patients in a major overhaul of regulations to speed up the process of how new medicines are approved and made available through the NHS.

Research
18 August 2021

RUDY: The next step in patient-powered research

The Lily Foundation is proud to be funding the Rare and Undiagnosed Diseases Study (RUDY), a ground-breaking mitochondrial disease research tool that puts patients in the driving seat.

Research
18 August 2021

Getting results: The story of Lily Exome Sequencing

How The Lily Foundation worked with the NHS to support families affected by mitochondrial disease. With Professor Rob Taylor and Dr Charulata Deshpande.

Research Personal stories
12 August 2021

How Lily research changed our lives

When we lost our first child to mitochondrial disease we feared we'd never be able to have more, but thanks to The Lily Foundation we now have the family we always wanted, writes Claire Tranter.

Research
27 July 2021

Lily-funded research contributes to study into cellular disorders

Scientists working with The Lily Foundation have published a new study that could help advance the development of treatments for many serious conditions including neurodegenerative disorders.

Research Awareness
24 June 2021

Research Focus: The Leigh Syndrome International Consortium

Since the inception of the Leigh Syndrome International Consortium in 2018, we’ve received a number of questions about the organisations involved and the goal of the collaboration. We hope these Frequently Asked Questions will provide better insight into who we are and what we’re working hard to accomplish.

Personal stories
23 June 2021

Happy as Harry

12-year-old Harry Johnson has Leigh Syndrome, a form of mitochondrial disease. We hear from his mum, Lucy Johnson on learning to live with the condition and what it's like to have a child diagnosed.

Awareness
8 June 2021

Liz Curtis awarded MBE for charity's work fighting mitochondrial disease

Liz Curtis, Founder and CEO of The Lily Foundation, has been awarded an MBE in The Queen’s Birthday Honours list for her services to people with mitochondrial disease.

Research
25 May 2021

Research Focus: Mito and neuropsychiatric disorders

The Lily Foundation is co-funding research into mitochondrial disease and mood disorders that could change the way we treat mental health in mito patients. Dr Alessandro Colasanti, Senior Clinical Lecturer and Honorary Consultant in Psychiatry at Brighton and Sussex Medical School and Sussex Partnership NHS Foundation Trust, is one of the researchers leading the study.

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News

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