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

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

We’re changing our twibbons ahead of World Mitochondrial Disease Week to raise awareness of mitochondrial disease 💚 Please change your twibbon today too! ⬇️ www.twibbonize.com/wmdw2025 #mitoaware

👉 '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

NHS England approves Idebenone (Raxone) to treat Leber’s Hereditary Optic Neuropathy, a rare genetic disease that can lead to sudden vision loss. 🔗 buff.ly/o45O7bu #NIHRsupported #RareDisease #LHON @ucleye.bsky.social @moorfields.bsky.social @lilyfoundation.bsky.social @cambridgebrc.bsky.social

📢 BREAKING NEWS! The first ever treatment for a mitochondrial disease has been approved for use by NHS England! Idebenone is now available for LHON patients A huge milestone for the mito community! 💥 www.thelilyfoundation.org.uk/news/first-e... @mitocamb.bsky.social

Zebrafish are helping scientists tackle rare #mitochondrialdiseases like MDDS In 2018/19, Lily funded research using zebrafish to test treatments Find out what happened in our latest Research Zone post with Research Manager Maria and Dr Ben Munro www.thelilyfoundation.org.uk/affected-by-...

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-...

10 years ago, The Lily Foundation stood at the heart of the campaign to legalise #mitochondrialdonation. Today, research confirms it’s working, giving families the chance to have healthy, genetically related children 💗 Read more and please share! www.thelilyfoundation.org.uk/news/breakth...

Are you a healthcare professional working with a #TK2d patient? Or are you or a loved one affected by this rare form of #mitochondrialdisease? Please help shape access to a potential new #treatment by sharing or completing our short survey by 17th Aug. freeonlinesurveys.com/s/BP8zdKCm Thank you

The recent report published by @lifearc.bsky.social and @geneticallianceuk.bsky.social gives several recommendations on how we can #ChangeTheRareFuture and get treatments to people with rare conditions faster. Read it here: t.ly/Ka7qn. @lilyfoundation.bsky.social

Discover in our Research Zone why biomarkers are essential for tracking #mito progression and how the @lifearc.bsky.social Centre for Rare Mitochondrial Diseases is supporting research to develop non-invasive, organ-specific tools for better care. www.thelilyfoundation.org.uk/affected-by-...

We’re proud to share the impact of Lily-funded research into vestibular dysfunction – a little-known but life-altering symptom affecting people with mito A newly developed framework is helping doctors support patients with balance issues – find out more www.thelilyfoundation.org.uk/affected-by-...

Thank you to everyone who took a swing at mito in last week’s Lily South West Golf Day at Cumberwell Park. We’re delighted to announce that your efforts raised a whopping £16,000! What’s more, we delighted to confirm we’ll be doing it all again next year, on Friday 29th May, so save the date!

Meet the minds behind the LifeArc Centre for Rare Mitochondrial Diseases Hear the excitement from the project leads as they hope to transform the mitochondrial research landscape, and meet mito patient Harry, who reminds us why this work matters www.thelilyfoundation.org.uk/affected-by-...

We’re proud that the @lifearc.bsky.social Centre for Rare Mitochondrial Diseases has officially launched at a prestigious House of Lords event – a significant milestone in transforming the UK’s rare disease research landscape Stay tuned to meet the lead minds behind the centre on our Research Zone!

If you work with anyone who's received a genetic diagnosis of mito – or has lost someone to the condition – we need them to fill out our national survey, closing on Tuesday Here’s our CEO and founder, Liz, to explain why every voice matters Please share: mpscom.eu.qualtrics.com/jfe/form/SV_...

💚 A MASSIVE THANK YOU 💚 To every incredible runner who took on the #LondonMarathon 🏃‍♂️ We've raised almost £125,000 to continue the fight against #mitochondrialdisease 🦋 Your dedication, courage and effort mean the world to us and we’re proud to have you on #TeamLily 💪 #LilyFoundation

The Big Lily Bid is now live!! This is your chance to own one-of-a-kind treasures generously donated by some of our amazing celebrity friends, and support The Lily Foundation’s work Bid now - our exclusive online auction closes at 9pm on Wednesday 30th April! astarauction.com/TheBigLilyBi...

We’ve launched a national survey with UCL & RDRP to learn more about how people receive a genetic diagnosis of #mitochondrialdisease It can be a long, complex process & we want to improve it Please share with your patients & networks 👉https://mpscom.eu.qualtrics.com/jfe/form/SV_6tgcIBuDfAcGhRI

Yesterday we were proud to join the launch of the LifeArc Centre for Rare Mitochondrial Diseases - a major step forward in mito research We led a workshop on making complex science clear – because involving patients is key to success #mitochondrialdisease #mitoresearch #patientvoice #raredisease

Today marks the start of #BritishScienceWeek We asked @ritahorvath.bsky.social what first drew her to science and how, as a project lead at the new LifeArc Centre for Rare Mitochondrial Diseases, she’s advancing the search for new treatments and a cure www.thelilyfoundation.org.uk/news/smashin...

Calling all rugby fans! Join us for a memorable night in Bath as Lions Legends Matt Perry, Lee Mears, Jeremy Guscott & Nigel Redman share their sporting memories All proceeds split between Sporting Family Change and The Lily Foundation Get your ticket www.thelilyfoundation.org.uk/charity/get-...

Today is #RareDiseaseDay Did you know there's still no cure for #mitochondrialdisease? @lilyfoundation.bsky.social are fighting to change this. We've invested over £3 million in research since 2007 Please help us to raise awareness of mito Find out more www.thelilyfoundation.org.uk

Ahead of #RareDiseaseDay, please join us to educate and increase awareness about rare mitochondrial diseases Getting mito in the public eye helps drive research, boost donations and improve clinical care for those affected Please share to advance rare www.thelilyfoundation.org.uk/affected-by-...