🧠 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 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...

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!!

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

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

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...

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...

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!

Congratulations!! A labour of love.

Interested in Pre-clinical Mitochondrial Disease Models? MRC MitoCluster is delivering a session this May at Queen Square Advances in Mitochondrial Medicine 2026. Register now to join! #MitochondrialDisease #MitochondrialMedicine #mtDNA #GeneticEngineering #PreclinicalResearch #RareDisease

We've worked really hard to create a easy accessible guide for those who are facing a new diagnosis of mitochondrial disease. 📖🩷 It's perfect for reading through for yourself or to send to a loved one to help keep them informed. Check out our fabulous new guide to mito.⬇️ https://ow.ly/391g50Yoxyj

Clinicians and researchers with an interest in #mitochondrial disease: Queen Square Advances in Mitochondrial Medicine (5 May 2026) is a CPD-approved course covering pre-clinical & translational research, and the latest updates in NHS diagnostic testing. Registration: www.ucl.ac.uk/brain-scienc...

A years-long diagnostic odyssey is a reality facing many people living with a rare disease. This special @newstatesman1913.bsky.social Spotlight podcast episode explores why. 🎧Listen now: t.ly/flE_n

@jellevda.bsky.social @ritahorvath.bsky.social @lilyfoundation.bsky.social @londonmito.bsky.social @mitonewcastle.bsky.social

More trials, better data, faster access. We worked with Genetic Alliance UK to develop a new report from the LifeArc Translational Centres for Rare Disease Hub, setting out how smarter policy can accelerate rare disease research. Read more 👉 https://t.ly/LJRi4

✨ Lily Adult Support Weekend 2026 ✨ We’re delighted to share that our Lily Adult Support Weekend will take place on 14th-16th August 2026 at Chesford Grange Hotel, Kenilworth. Read more: https://www.thelilyfoundation.org.uk/affected-by-mito/here-to-help/adult-support-weekend/

See how you helped to make a real difference last year 🤩🙌 Read The Lily Foundation Impact Report for 2024/25. Read it here - https://www.thelilyfoundation.org.uk/media//the_lily_foundation_impact_report_2024-25.pdf

Collectively, there are around 7,000 rare diseases, yet the voices of the people and families living with these conditions are rarely heard. Today, we're sharing some of these stories and reminding people of the millions of lives impacted by rare disease. #RareDiseaseDay

To mark #RareDiseaseDay, we worked with the @newstatesman1913.bsky.social#RareDiseaseDayand key industry voices to create a rare disease report looking at where the opportunities lie to create better outcomes for patients: https://t.ly/EyekY

Today is Rare Disease Day (28th Feb 2026). Rare diseases impact over 300 million people globally — yet patients often experience long diagnostic journeys and limited treatment options.

#mito @mrc-mbu.bsky.social @taylorlabncl.bsky.social @londonmito.bsky.social @mitonewcastle.bsky.social

Rare isn’t rare when it affects millions... Did you know? 3.5 million people in the UK are living with a rare condition. Share to help raise awareness and show your support for the rare disease community. #RareDiseaseDay #MitoAwareness #ShowYouCare

If you are near Cambridge UK, come to our #LivingRare event at the DISC on 27 Feb - perfect for anyone who works on the Cambridge Biomedical Campus or at Addenbrookes, Papworth or Rosie Hospitals! camrarerarediseaseday2026.eventbrite.co.uk

We’re excited to share 'Rare Perspectives' - an insightful discussion at #RAREsummit25, where our panelists came together to discuss the realities of both living (and working) rare. Some members of our audience share their ‘top 5 rare priorities’. What are yours? youtu.be/jzq7wDS4kFQ #RareDiseaseDay

To all #mitochondria lovers: Euromit 2026 early-bird registration is coming up!

Very excited for @cuh.nhs.uk and @camneurodept.bsky.social to be involved in this first in human trial: investor.stoketherapeutics.com/news-release...

The Lily Family Support Weekend is a unique opportunity for our families to get together and relax in a safe, caring environment where people just ‘get it’. Your donations make support weekends as well as vital research possible 🩷

Today, we're sharing an open letter from our Chief Executive, Professor Sir Ian Chapman, outlining changes to UKRI investment approach, and addressing concerns about research funding and the financial position of STFC. Read his letter here: www.ukri.org/news/open-le...

Join #CamRARE in Cambridge (27 Feb) for #RareDiseaseDay Through powerful lived-experience stories & a multidisciplinary panel, we’ll explore what it means to live with a rare condition & how systems can better respond throughout a lifetime. Tickets: camrarerarediseaseday2026.eventbrite.co.uk

Milner Seminars: focus on neurodegeneration 🧠 We're excited to welcome you to our 2026 seminar series! Join us on 27 January for talks by Daniel Tams (Astex) and Stefano Pluchino (University of Cambridge) 🔗 https://milner.glueup.com/event/milner-seminars-focus-on-neurodegeneration-163500/

We have entered our fabulous 'What It Takes' video into the 2026 Smiley Awards, and we need YOU!🩷 For a chance for us to win we need you to vote for us ⬇️ https://smileycharityfilmawards.com/films/what-it-takes

Final week to get your applications in!!

Need a change? Then apply to join our Cambridge team working on #mito disease! Research coordinator post now live, working with @mitonewcastle.bsky.social @londonmito.bsky.social @lilyfoundation.bsky.social on the @lifearc.bsky.social centre for Rare #mito diseases! www.cam.ac.uk/jobs/clinica...

Every donation to The Lily Foundation will be matched pound-for-pound, thanks to a group of generous supporters, up to £2,250! For example 🎁Give £10 → It becomes £20! 🎁Give £20 → It becomes £40! And so on… Click here to donate today! https://www.justgiving.com/campaign/lilychristmas2025

Latest paper in collaboration with the Nicholls lab 🎉 Out in @narjournal.bsky.social academic.oup.com/nar/article/...