@lilyfoundation.bsky.social
Fighting mito, finding hope Our vision is for a world in which every mitochondrial disease patient has a voice and access to treatment, support to improve their life and, ultimately, a cure. https://www.thelilyfoundation.org.uk/ #mitochondrialdisease
Early bird tickets are here! 🎟️
📅 21 March 2026 | Park Plaza Riverbank, London
🎟️ Early bird price: £180 – available for a limited time!
Join us for glamour, live entertainment & a night that truly makes a difference. ❤️
https://ow.ly/NZ7N50X90XP
This week marks Baby Loss Awareness Week ✨
On Wednesday, people across the world will join together in the Wave of Light—lighting a candle at 7pm to remember the babies who are no longer with us. 🕯️
We warmly invite members of our community to take part if they wish 🩷
👁️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
🔬 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. 💚
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
Announcement graphic from NIHR Moorfields Biomedical Research Centre. The top section features a dark blue background with white text stating 'NHS England approves first-ever mitochondrial disease treatment.' To the right, there's an aerial-style illustration of the UK and Ireland at night, with glowing city lights and network lines suggesting connectivity. The NIHR Moorfields logo appears in the top left. The bottom section has a white background with red italicized text reading 'Read our latest news item.
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
Orange fading to pink background. Lots of figures greyed out with three (rare) figures much bolder. Text says: there is an opportunity to change the future for millions of people living with rare conditions in the UK
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-...
