Did you know it’s World Mitochondrial Disease Week from 15th-21st September? Please help us to get mito on the map all over the UK!
Did you know it’s World Mitochondrial Disease Week from 15th-21st September? From Land’s End to John O’Groats, we want to get everyone talking about mitochondrial disease. Because getting mito in the public eye helps drive research, boost donations and improve clinical services.
What is World Mitochondrial Disease Week?
World Mitochondrial Disease Week is celebrated globally to educate and increase awareness about mitochondrial disease. it’s an initiative of the International Mito Patients (IMP), a group which unites mitochondrial disease patient organisations around the world.
It’s a true collaborative effort to spread the word about incurable mitochondrial disorders, the impact they have on patients and families, and the desperate need to develop treatments to alleviate symptoms and improve lives. You can find out more about mitochondrial disease and its symptoms, and the life expectancy of someone who’s been diagnosed, by watching our What’s mitochondrial disease? video.
When is World Mitochondrial Disease Week 2025?
It always takes place during the month of September, and this year’s awareness week runs from Monday 15th to Sunday 21st September. Wherever you live, there are lots of ways you can get involved in this significant week, and we’ve got loads of fun and exciting things planned.
This year, we’re making it our mission to put mitochondrial disease on the map all over the country. Together let’s make this year’s event the biggest and most far-reaching yet!
How can I make a difference?
These are just some of the ways you can get involved:
We’ve created some World Mitochondrial Disease Week twibbons which you can add to your social media profile pictures as a simple way to show your support.
Just choose any photograph you’d like to use as your profile picture then follow the instructions on the link above. (This is a free service so please don’t enter any bank or payment details at any point during the process.)
Once the twibbon has been added to your photo you can download your icon and start spreading the word about mito.
Your story is important – make sure it gets heard. If you’ve been directly affected by mitochondrial disease, we’re asking you to share your journey with local press organisations, radio and TV stations and put mito on the map in your area.
This is your chance to tell people all about mitochondrial disease, to talk about the challenges those affected by it face every day, as well as what you’re doing to spread the word about the disease during awareness week. We’ve put together a simple guide to help your story stand out.
Setting up a Lily Foundation awareness stand is a great way to spread the word about mitochondrial disease in your community. Any location with plenty of passing traffic is ideal, such as your local school, supermarket, sports centre or health centre.
Our FREE awareness packs include leaflets, wristbands, stickers, bunting, balloons, a poster, collection box and Lily t-shirt. And this year we’ve added in ‘Ask me about mito’ pin badges to really start a conversation. If you'd like to get involved please request a pack.
Share mito facts
We’ve also put together some hard-hitting facts about mitochondrial disease for you to share amongst your networks. You can add your own personal message in your post, but don't forget to include the #mitoaware hashtag.
We’ve worked hard to give our facts a shiny new look this year so hopefully they’ll be hard to miss. We’ll be sharing a new fact every day during WMDW, but you can download and share them yourself whenever you like.
Light Up for Mito
Every year, monuments and landmarks around the world are lit up green to raise awareness about mitochondrial disease. This year, Light Up for Mito will be on Saturday 21st September. If you’d like to light up a significant building in your local area we have an email template for you to adapt.
Last year we got hundreds of historic monuments involved, including the Gateshead Millennium Bridge, the Mersey Gateway Bridge and the Wallace Monument in Stirling. Lighting up green is a great photographic opportunity for social media, and a fab way to raise awareness because local press will often pick up the story.
Why raise awareness about mitochondrial disease?
Did you know mitochondrial dysfunction has been identified as a key factor in other, more common, diseases including dementia, Parkinson’s disease, epilepsy and cancer? The research The Lily Foundation funds and supports therefore has the potential to benefit not only mitochondrial disease patients but millions of others too. That’s why, despite being a little-known condition, mitochondrial disease could be the key to some of the most important medical breakthroughs of our time.
Whatever you choose to do to mark World Mitochondrial Disease Week, don’t forget to tell us. Tag us on X, Facebook, Instagram, LinkedIn or Tiktok or email [email protected] and we’ll make sure everyone knows about it!
