Delighted to share the launch of the Cambridge-led, £50m MRC Centre of Research Excellence in Mitochondrial Genome Therapeutics (CoRE-MitoGT). Over 14 years, we will unite international expertise to understand mtDNA disease & develop therapies targeting its root causes. www.ukri.org/news/mrc-fun...

MRC funds world-class research into fatal genetic diseases

The Medical Research Council (MRC) has invested £50 million into the study of mitochondrial diseases to improve treatments.

ukri.org

The @lifearc.bsky.social Centre for Rare Mitochondrial Diseases is pleased to feature in #Raremap – a new directory connecting rare disease organisations. Raremap makes it easier to find partners & collaborators across the rare disease ecosystem. Visit Raremap: raremap.co.uk #mito #RareDisease

Home - Raremap

Your guide to the rare disease research ecosystem in the UK Raremap has been created to help you find out more about the organisations in the UK rare disease ecosystem, what they do and how they inter...

raremap.co.uk

The Lily Foundation are proud to feature in Raremap – a brand new directory of rare disease organisations What a brilliant resource to drive progress for those living with rare conditions Find out more: https://raremap.co.uk/ #RareDisease #MitochondrialDisease #Raremap #MitoAware LifeArc

Home - Raremap

Your guide to the rare disease research ecosystem in the UK Raremap has been created to help you find out more about the organisations in the UK rare disease ecosystem, what they do and how they interact with each other. Categories of organisations, groups and networks There are many different groups and organisations all involved […]

raremap.co.uk

*Save the date* 🗓️ 20th Annual Neuromuscular Translational Research Conference will take place Tuesday 20th and Wednesday 21st April 2027, at the UCL Institute of Child Health in London. More info to follow in coming months.

In a letter published today in the @financialtimes.com, our CEO Sam Barrell welcomes increased investment in rare diseases while arguing that much more needs to be done to bring new treatments to patients. www.ft.com/content/d365...

Letter: UK can lead way on rare disease treatments

From Sam Barrell, CEO of LifeArc, London WC1H, UK

ft.com

It's brilliant to have so many organisations joining Raremap. If you work in rare diseases and are not part of the directory yet, apply to be added now.

Oxford-Harrington Rare Disease Centre@oxfordharrington.bsky.social · 2w ago

We're delighted to be included on Raremap, a new guide to the UK's rare disease research ecosystem developed by @lifearc.bsky.social and @rdrukhub.bsky.social. Explore: 🔗 : buff.ly/yQx6pYT #RareDiseases #RareDiseaseResearch

And now, we also have a #bioinformatician post live as well! 📢📢. Apply here: www.cam.ac.uk/jobs/bioinfo... #mito @ritahorvath.bsky.social @jellevda.bsky.social @mrc-mbu.bsky.social

Cambridge Clinical Mitochondrial Research Group@mitocamb.bsky.social · last mo.

We have not one but TWO post-doc opportunities in our group: Molecular and cellular biology of mitochondrial disease models: www.cam.ac.uk/jobs/postdoc... Targeting mitophagy to modulate nuclear-mitochondrial interactions: www.cam.ac.uk/jobs/researc... Apply now!! @ritahorvath.bsky.social

🧠 How can 'mini brains' help unlock the mysteries of mitochondrial disease? Read more about this fascinating research via the link ⬇️ https://www.thelilyfoundation.org.uk/affected-by-mito/our-research/research-zone/how-mini-brains-are-helping-scientists-study-mitochondrial-disease/

We look forward to working with you Arantxa!! @londonmito.bsky.social @mitonewcastle.bsky.social @jellevda.bsky.social @taylorlabncl.bsky.social @ritahorvath.bsky.social @mrc-mbu.bsky.social @robpitceathly.bsky.social

The Lily Foundation@lilyfoundation.bsky.social · 4w ago

We're delighted to welcome Arantxa to The Lily Foundation as our new Public and Patient Involvement and Engagement (PPIE) Manager! Please join us in giving Arantxa a warm welcome! 🩷 To read more about Arantxa click here ⬇️ https://ow.ly/xgf650Zl00v

The very fit and healthy team here at UCL Queen Square Institute of Neurology are running 10K for the National Brain Appeal this weekend, under a hot sun! Runners include our Director Professor Mike Hanna. Please consider donating to this excellent charity! www.justgiving.com/page/the-nat...

We are running the Saucony London 10K 2026!

Help The National Brain Appeal Page raise money to support The National Brain Appeal

justgiving.com

At the LifeArc Translational Science Summit, our CEO Sam Barrell reflected on the importance of bringing together the translational community and why the UK is so well-placed to advance treatments for people living with rare diseases. #LATSS2026

We have not one but TWO post-doc opportunities in our group: Molecular and cellular biology of mitochondrial disease models: www.cam.ac.uk/jobs/postdoc... Targeting mitophagy to modulate nuclear-mitochondrial interactions: www.cam.ac.uk/jobs/researc... Apply now!! @ritahorvath.bsky.social

Thank you for organising them!!

The Lily Foundation@lilyfoundation.bsky.social · last mo.

We are always so grateful to the clinical teams who give their time so generously to support our Lily Family Weekend. 🩺 Your time and kindness make a real difference. #mitochondrialdisease #mito

Science, smiles and special connections at our Lily Family Weekend. 💗🔬 It was wonderful to bring families, clinicians, researchers and early career scientists together to share knowledge, ask questions and explore the science behind mitochondrial disease. #science #raredisease

We're hiring a Postdoctoral Research Associate at the MRC Mitochondrial Biology Unit @mrc-mbu.bsky.social Cambridge Join our ARIA Precision Mitochondria project with Bitrobius Genetics to develop novel technologies for mitochondrial DNA delivery and genome engineering www.cam.ac.uk/jobs/researc...

Our CEO Liz Curtis spoke to xtalks.com recently about The Lily Foundation’s strategy to transform mitochondrial disease research and our long-term vision for the UK Mitochondrial Disease Research Institute. Read the full interview 👇 https://ow.ly/Wz1G50Z7vEw

The Lily Foundation’s Strategy to Transform Mitochondrial Disease Research

Learn how The Lily Foundation is driving progress in mitochondrial disease research through patient registries and more.

ow.ly

Euromit 2029 is coming to Newcastle! Following a successful bid led by Prof Laura Greaves & UK colleagues, Newcastle Mitochondrial Research Group will host Europe’s leading mitochondrial meeting. The Lily Foundation is proud to support the organising committee & help shape the patient programme.

📅 Mark your calendars – 16 June 2026 Join us for the next webinar in our series: an informal yet informative session exploring the journey to diagnosing mitochondrial disease. To find out more - https://ow.ly/wC8L50Z4Jiq

We are delighted to share a new open-access study by Dr Micol Falabella & colleagues, published in @natcomms.nature.com Nature Communications: "COXFA4L2 upregulation preserves residual cytochrome c oxidase activity in COXFA4-related Leigh-like encephalopathy" Paper: www.nature.com/articles/s41...

These are great sessions with really knowledgeable speakers! @londonmito.bsky.social @mitonewcastle.bsky.social

The Lily Foundation@lilyfoundation.bsky.social · 2mo ago

📅 Mark your calendars – 16 June 2026 Join us for the next webinar in our series: an informal yet informative session exploring the journey to diagnosing mitochondrial disease. To find out more - https://ow.ly/tp8v50Z4JiH

Trying to understand how cells work used to be a bit like making a smoothie 🍓🥭🍌 To read more about this insightful research click here https://ow.ly/2z3t50Z14hQ

Visualising heteroplasmic mitochondrial DNA variants in situ? Now out as #mtDNA-smFISH in @cp-devcell.bsky.social! We find purifying selection against pathogenic mtDNA variants through genetic bottlenecks in the germline and the developing brain. www.cell.com/developmenta...

Single-molecule mitochondrial DNA imaging reveals heteroplasmy dynamics shaped by developmental bottlenecks and selection in vivo

Chandrasegaram et al. directly visualize mitochondrial DNA inside intact cells and tissues and reveal how genetic cell-to-cell variability arises during development. They show that somatic bottlenecks...

cell.com

Wonderful work from our lab's first PhD student Rajini Chandrasegaram, with Antony Hynes-Allen, Stavroula Petridi, @beitongtong.bsky.social, @abhilesh.bsky.social. Thanks to great collaborations with Hansong Ma, @prudentlab.bsky.social @mitocamb.bsky.social @frisophagy.bsky.social!

From thymidine kinase 2 deficiency (TK2d) recognition to management Diagnosis pathways are rarely linear and shaped by key clinical decisions. At #Euromit2026, UCB joins scientific exchange on TK2d, through sessions, exhibition, and a symposium on the journey from recognition to disease management.💬

Listen to the latest episode of the Rarely Heard podcast from Beacon for Rare Diseases to hear our Head of Rare Disease, Alessandra Gaeta, in conversation with other industry experts on the evolving world of rare disease policy. https://www.rarebeacon.org/rarely-heard/season-three/

@lilyfoundation.bsky.social is advertising for a new #PPIE Manager. This person will strengthen the teams’ ability to embed PPIE within the @lifearc.bsky.social as well as across the #mito community. @londonmito.bsky.social @mitonewcastle.bsky.social www.thelilyfoundation.org.uk/charity/what...

Join our team - The Lily Foundation

Explore our current job vacancies and find out how you can help fight mitochondrial disease.

thelilyfoundation.org.uk

Great to see such a strong turnout, and a continued emphasis on collaboration - with patient organisations as well as across clinical and scientific disciplines Looking forward to seeing how these conversations shape future research and, ultimately, improve outcomes for people living with mito

Great to bring together 70+ researchers & partners at the LifeArc Centre for Rare Mitochondrial Diseases Annual Meeting in Cambridge last week! From scientific updates and flash talks to patient voice discussions it was a day full of insight and collaboration!

Individually rare. Collectively common. The @newstatesman1913.bsky.social special rare disease report explores what more can be done to deliver faster diagnoses and better treatments. 👉 Read now: https://t.ly/EyekY

Wonderful and honoured to write a perspective with @prudentlab.bsky.social @mrc-mbu.bsky.social on such an intriguing and cool observation of beautiful mitochondrial biology! Amazing work on how pearling allows mitochondrial genome organisation by @jclandoni.bsky.social @sulianamanley.bsky.social!

Juan C. Landoni@jclandoni.bsky.social · 4mo ago

Check out the fantastic perspective by @jellevda.bsky.social & @prudentlab.bsky.social on our #pearling work, out in the same @science.org issue! www.science.org/doi/10.1126/...