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/...

This ‘fundamental’ study uncovers how directing pyruvate into mitochondria can shrink cells by shifting their metabolism away from building amino acids and proteins. buff.ly/hFHjKy9

Some amazing work that's all over the News this morning. This important work is co-funded by @lifearc.bsky.social who also co-fund our LifeArc Centre for Rare Mitochondrial Diseases bit.ly/4moq7xV #rarediseases #LifeArc

👁️ 23 November: ADOA Awareness Day 🌍 On Sunday 23 November it’s ADOA Awareness Day! A day for raising global awareness for the hereditary eye conditions ADOA and ADOA-plus. You can help The Cure ADOA Foundation increase awareness of ADOA by sharing this post. bit.ly/4o5iLzY #ADOAawarenessDay

🎙️ Focus Speakers – Rita Horvath 👀 Curious to know who will be speaking at #euromit2026 ✨ Today, we’re introducing Rita Horvath. 👉 Stay tuned: every week for a month, new speakers will be featured. #euromit2026 #speakers #mitochondria #angers #scienceconference

🎙️ Focus Speakers – Michal Minczuk @mitogene.bsky.social 👀 Curious to know who will be speaking at #euromit2026 ? ✨ Today, we’re introducing Michal Minczuk who will be taking the stage at the congress. #euromit2026 #mitochondria #angers @univangers.bsky.social @ua-recherche.bsky.social

📢 Check out this exciting new study by Professor Patrick Chinnery from @mrc-mbu.bsky.social, who will be joining #Euromit2026 as keynote speaker! pubmed.ncbi.nlm.nih.gov/41066576/ #MitochondrialDisease #mtDNA #mitochondria #euromit2026 @ua-recherche.bsky.social @chuangers.bsky.social

A group of us from the LifeArc Centre for Rare Mitochondrial Diseases bit.ly/4moq7xV attended the LifeArc Translational Centres for Rare Diseases Annual Showcase yesterday @lifearc.bsky.social. Great to make connections and share knowledge with the other rare disease centres #LifeArc #rarediseases

A brilliant explainer from The Lily Foundation on the science behind genetic diagnosis in mitochondrial disease — featuring cake as a metaphor! 🍰 youtu.be/MCx4joZJtFY #Mito #MitochondrialDisease #GeneticTesting #RareDisease #ClinicalResearch #TheLilyFoundation

So great to hear about some of the amazing work being done at the MRC Mitochondrial Biology Unit @mrc-mbu.bsky.social yesterday. There is much more today too. Hopefully you have been able to catch up with some of the latest in #Mito research. Open to MRC MBU members only.

Congrats Michele! Great work! @jellevda.bsky.social @mrc-mbu.bsky.social @mbu-postdocs.bsky.social

👁️Today is World Sight Day – and we’re proud to reshare some incredible news for the mito community. Idebenone is now available for patients with LHON – a breakthrough that could help preserve vision and improve lives. 📖 Read Mary’s story to learn more: https://ow.ly/MZhL50X3wtH

Congratulations to @lucialugut.bsky.social who passed her PhD with flying colours last week; and with no thesis corrections ☺️🎓👏

🔬 Supporting medical research into mitochondrial disease is at the heart of our mission. Explore our past and current research projects - https://www.thelilyfoundation.org.uk/affected-by-mito/our-research/lily-funded-research-projects/ Together, we’re driving hope through science. 💚

📢 We are recruiting a post-doctoral clinical research associate to join the @lifearc.bsky.social Centre for Rare #Mitochondrial Diseases, supported by @mdukcharity.bsky.social It's an exciting time in mito research! For further details and to apply visit: www.cam.ac.uk/jobs/clinica...

Rare disease is collectively common, affecting ~1 in 17 people in the UK. The LifeArc Translational Centres for Rare Disease each tackle a different area of unmet need, but together they're building a stronger rare disease research ecosystem. Learn more: https://t.ly/zAEj- #LifeArcTCRD

Raising awareness of #mito isn't easy – it’s a complex disease that can be hard to explain 🤔 To help put mito on the map during World Mitochondrial Disease Week, our Research Manager @abioblog.bsky.social is here to explain the disease in a really simple way Watch, learn and share! 💚 #mitoaware

🎉Today marks one year of the LifeArc Translational Centres for Rare Disease. These four Centres are breaking down the barriers in rare disease research and accelerating the development of new tests and treatments. #RareDisease #LifeArcTCRD #OneYearOfImpact

A Publication of interest 🎓 🧬 💚 Organelle-tuning condition robustly fabricates energetic mitochondria for cartilage regeneration. Link to paper: bit.ly/41Xwxg5

MitoWorld Supports Mitochondrial Disease Week

Replication competition drives the selective mtDNA inheritance in Drosophila ovary www.cell.com/cell-reports...

It’s here – World Mitochondrial Disease Week! 💚 We’re proud to collaborate with other mito charities across the UK to put mito on the map – let's spread the word together! 👉 See how you can get involved: 🔗 thelilyfoundation.org.uk/charity/get-involved/world-mitochondrial-disease-week

A discussion about the approval of idebenone for #LHON from the patients’ perspective: www.moorfields.nhs.uk/about-us/new... @moorfieldsbrc.bsky.social @moorfields.bsky.social

RNIB Connect Radio’s Toby Davey was joined by Patrick Yu-Wai-Man, Professor of Ophthalmology at the University of Cambridge who was involved in the research into using idebenone to treat Leber hereditary optic neuropathy (LHON). Listen here: audioboom.com/posts/876813... @lilyfoundation.bsky.social

👉 'A huge win for the mito community' First ever treatment for a mitochondrial condition that causes sudden vision loss has been approved for use on the NHS in England! 👉 bit.ly/4oHO8m3 @cuh.nhs.uk @mitocamb.bsky.social @cam.ac.uk @moorfieldsbrc.bsky.social @lilyfoundation.bsky.social

This is amazing news!! @camneurodept.bsky.social @mrc-mbu.bsky.social @jellevda.bsky.social @ritahorvath.bsky.social @mito-news.bsky.social

Did you catch the latest about #RAREsummit25? - the programme is shaping up! RAREsummit alumni, patients pitching research ideas, interactive workshops, networking dinner and more... Read more here & grab your tickets before they're all snapped up! www.camraredisease.org/raresummit25...

📢 We are hiring a Senior Research Associate in Bioinformatics & Statistical genetics @cam.ac.uk @mrc-mbu.bsky.social @camneurodept.bsky.social @jellevda.bsky.social It's a great time to join this dynamic and world leading team working on #mitochondria Closes 28/8/25 www.cam.ac.uk/jobs/senior-...

Kerry & Jelle discuss developing gene therapies for mitochondrial disease — in collaboration with labs around the world! - Watch the Video bit.ly/3UCF0kC 🌍Sign up to IMPACT to let your voice be heard bit.ly/4ohHhiN

Love this! @ritahorvath.bsky.social

How to go about designing a leaflet with patients newly diagnosed with mitochondrial disease - a Video from Heather & Elizabeth bit.ly/475t7em #Mito #PPIE

We’ve been hearing a lot about #mitochondrialdonation today – but what exactly is it? It’s a groundbreaking fertility technique that helps women with faulty mitochondrial DNA have healthy babies Want to understand more? Watch our explainer video 👇 www.thelilyfoundation.org.uk/affected-by-...

Out now: rdcu.be/evxCv We've used CoQ10 headgroup intermediates to treat mouse models of a mitochondrial disease and improve the neurological symptoms of a patient with this disease. Grateful for funding from @damonrunyon.org , Pershing Square Foundation, @americancancersoc.bsky.social, NIH!