@lilyfoundation
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
Lizzy's spent years, and thousands of pounds, travelling the world in search of answers to daughter Mathilde’s health problems.
Today, that journey's come full circle thanks to our Precision Diagnostics project.
Read their story:
https://ow.ly/TxgM50YqgK9
#MitochondrialDisease
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
Our Fundraising Teams come together in honour of someone special 🩷
And we have some exciting news… our brand new leaflets and banners have arrived and they look absolutely amazing! ✨ We couldn’t be more proud – check them out!
Join us at Cumberwell Park Golf Club in the beautiful Wiltshire countryside for a fantastic day of golf, food and fundraising in support of The Lily Foundation.
If you're interested check out our website — this event sells out fast, so don’t miss your chance to be part of it!🔥
Rare Disease Day is TOMORROW!
This year, we're shining a light on mitochondrial disease — a rare genetic condition that affects the body’s ability to produce energy. Mitochondrial disease is just one of around 7,000 rare diseases recognised worldwide.
#RareDiseaseDay2026
This Saturday is Rare Disease Day 🩷
We’re raising awareness of mitochondrial disease...
The Lily Foundation are working tirelessly, week in, week out, to fund research, support families, and fight for better outcomes for those affected.
This Saturday is #RareDiseaseDay2026 !
Did you know there’s still no cure for mitochondrial disease? The Lily Foundation are fighting to change this and have invested over £3 million in pioneering research since 2007!
Share to show you care 🩷
This Saturday is Rare Disease Day 🩷
Rare diseases aren’t as rare as you think – over 300 million people worldwide are living with one...
Join with us to break the stigma and help spread the word on #RareDiseaseDay2026
Ahead of #RareDiseaseDay, please join us to educate and increase awareness
about rare mitochondrial diseases
Show you care and share, let's shout about mitochondrial disease and raise awareness around it!🩷 #MitochondrialDisease #Awareness
#RareDiseaseDay is one day each year dedicated to increasing awareness of the
3.5 million people living with a rare disease.
Please help to raise awareness and help The Lily Foundation put mito on the map 🗺️ this rare disease day!
Did you know? Only 1 in 20 rare conditions have an approved treatment...
For families affected by rare diseases like mitochondrial disease, this is the reality.
This #RareDiseaseDay, we’re fighting for progress, share to show you care.
Three years… can you even remember what you were doing back then?
No one should have to wait this long – please share and help The Lily Foundation to
fight for awareness and better care this #RareDiseaseDay
This Saturday is Rare disease day!
Did you know? 1 in 17 people live with a rare disease... Share to show you care.
To read more visit:
https://www.thelilyfoundation.org.uk/news/three-and-a-half-million-isnt-rare/
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
Summer is right around the corner, who's excited for sun and swimming?☀️🌊
Whether you’re a seasoned open water swimmer or dipping your toe in for the first time, you can choose a challenge that suits you!
Join thousands of like-minded swimmers⬇️
https://ow.ly/yPho50Y4QNo
Congratulations to Prof. Bobby McFarland on being named to the 2026 TIME100 Health List, which recognises the world’s most influential leaders in health.
As a member of our Medical Board, Bobby has brought hope to families across our community. Newcastle Mitochondrial Research Group
We're proud to share that Professor Bobby McFarland has been named in the 2026 TIME100 Health List of the World's Most Influential Leaders in Health! 👏
This award recognises his contribution to research, which has transformed the lives of many families affected by mitochondrial disease.
#WeAreNCL
#HappyHugDay!🫂
It's a small gesture, but they carry love, strength, and understanding — and they mean more than words could ever say. Each one carries comfort, strength, and a reminder that none of us face this journey alone. 🩷
Due to a cancellation we have ONE SPACE LEFT at the Manchester Marathon! 🤩
From the start line buzz to the unforgettable finish, the Manchester Marathon is an experience like no other. Lace up, take it all in, and be part of something truly special 🏃♀️✨
https://ow.ly/csKw50Yc9tu
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 🩷
It’s #FeedingTubeAwarenessWeek🩷
Many people in our community use a feeding tube, and for those who don’t, it’s natural to have questions!
Please share to your stories and help us raise awareness during Feeding Tube Awareness Week!!
Comedy Night Is TOMORROW, who's excited?!🤣
We have 5 fabulous comedians lined up, Marcus Brigstocke, Mark Steel, Tiff Stevenson and Bella Hull - all this for just £25, what a bargain!🤩🙌
There's still time to buy a ticket!⬇️
https://ow.ly/MsKi50Y4UOw
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
Parallel Windsor is the UK’s most inclusive fundraising festival is coming — and for the first time, Lily has guaranteed places available!! 🩷
🔗 Find out more - https://www.thelilyfoundation.org.uk/charity/get-involved/events/parallel-windsor-2026/
Pssst... Royal Parks Half Marathon ballot is now open! 🏃♀️🌳
🔗 Enter the ballot now and choose Lily as your charity 🩷
https://www.royalparkshalf.com/
We have entered our fabulous 'What It Takes' video into the 2026 Smiley Awards, and we need YOU!🩷
Vote for us ⬇️
https://smileycharityfilmawards.com/films/what-it-takes
Grab your ticket today!!!💃❤️
We’re thrilled to announce that award-winning comic, author, actor and broadcaster Dominic Holland will be hosting the night — promising glamour, laughter and unforgettable moments!
🔗 Book now - https://ow.ly/snBQ50XZIA3
🎤 5th Comedian Announced - Tiff Stevenson! 🎤
Don’t miss this feel-good night of comedy with purpose! 🎟️
https://www.thelilyfoundation.org.uk/charity/get-involved/events/lily-comedy-night-2026-save-the-date/
Take your running to the global stage and join Team Lily at the 48th Bank of America Chicago Marathon, one of the world’s legendary Major Marathons 🩷
Travel and accommodation are self-funded. Places are limited.
👉 Sign up now!
https://ow.ly/UyPF50XZAeP
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