World Mitochondrial Disease Week, held from Monday 15 to Sunday 21 September 2025, raises awareness about mitochondrial diseases (mito). It aims to improve the lives of people affected by mito and to increase awareness among doctors and the general public.
What is Mitochondrial Disease?
Most people have never heard of mitochondrial diseases. It is thought to affect 1 in 5000 people, making it the second most commonly diagnosed, serious genetic disease after cystic fibrosis. Researchers have discovered links between mitochondrial dysfunction and other conditions including Alzheimer’s disease, Parkinson’s disease, diabetes, cardiac issues and some cancers.
Scientists believe that by focusing on mitochondrial dysfunction, they may be able to devise effective treatments and potential cures for mito and help the millions of people who suffer from the above-mentioned diseases.
Mark your calendars for the 15 - 21 September 2025
and take part in World Mitochondrial Disease Week 2025!
Be creative and share with each other about Mito Week, spread the word amongst your friends, family and others.
Post your events using the form on our website and use social media to make your personal Mito Week a success, don’t forget to use the official hashtags #WorldMitoWeek2025 and #DecodeTheMitoPuzzle so everyone can see your contribution!
This year's World Mitochondrial Disease Week official theme is:
Decode the Mito Puzzle – Bridging Science and Symptoms
Mitochondrial diseases are a complex set of conditions that are often misunderstood. Because symptoms vary widely and are linked to individual genetic changes, each patient presents a unique medical puzzle. This year’s theme focuses on connecting scientific understanding with the lived experiences of patients to improve diagnosis, care, and long-term outcomes.
The campaign raises awareness of the vital role genetics plays in mitochondrial diseases, the importance of early detection and testing, and the promise of new research. By translating science into real-world solutions, we can empower families, support clinicians, and bring hope to everyone affected by mitochondrial diseases.
Key messages
1
The Complexity of Mitochondrial Diseases
Mitochondrial diseases manifest differently in every patient due to genetic changes, making it a unique and complex puzzle to solve.
Common symptoms include muscle weakness, fatigue, vision and hearing loss, heart problems, and developmental delays.
2
Connecting mito to Daily Life
Mitochondria play a crucial role in energy production; disruptions can lead to a wide range of symptoms affecting the entire body.
Mito can affect any organ and cause any symptoms at any age.
3
Advancing Science for Better Care
Breakthroughs in mitochondrial research are paving the way for innovative therapies and early detection.
Research into genetic testing, mitochondrial replacement therapy, and pharmacological advancements offers hope for future treatments.
4
From Awareness to Action
Raising awareness about mitochondrial diseases encourages earlier diagnoses, better management, and increased research funding. Empowering patients and caregivers with knowledge can lead to improved quality of life and proactive health management.
5
Bridging the Gap Between Science and Symptoms
Educating the public about the genetic basis of mitochondrial diseases helps demystify its symptoms and challenges. Collaboration between researchers, clinicians, and patients is key to translating scientific discoveries into real-world impact.
6
The Role of Early Detection and Genetic Testing
Early diagnosis through genetic testing can guide treatment decisions and support better care.
7
Hope Through Research
Ongoing studies into mitochondrial function offer hope for reversing and mitigating disease symptoms.
By solving the "mito puzzle," researchers can unlock new pathways for a healthier future.
TK2d Awareness Day
Save the Date for TK2d Awareness Day - Tuesday 9 September
Thymidine kinase 2 deficiency (TK2d) is a debilitating and life-threatening genetic disease that causes progressive and severe muscle weakness.
Many patients lose the ability to walk, eat, and breathe independently.
1 in 5,000 people have some form of this genetic mitochondrial disease. Prevalence of TK2d itself is still being researched.
Join us in raising awareness for TK2d.
LHON Awareness Day
Mark your calendars for LHON Awareness Day - Friday 19 September!
LHON stands for Leber’s Hereditary Optic Neuropathy. It is a type of mito caused by a change in the function of mitochondria, which are the energy producing organelles.
In LHON the optic nerve is particularly vulnerable to mitochondrial defects because of the high-energy requirements and the need to keep the retina transparent to light.
LHON has a prevalence of 1/25,000 to 1/50,000 and it is more frequent in males.
Help us shine a light on LHON, which affects many lives.
Light Up for Mito
On Saturday 20 September, landmarks, buildings, and monuments around the world lit up green to shine a light on mitochondrial diseases.This powerful global display raises visibility, sparks conversations, and shows solidarity with the mito community.
How You Can Take Part
Invite a local building or monument to join the next Light Up for Mito campaign. Use our editable invitation letter to make your request simple and effective.
Want to spread the word even further? Personalise our press release and share it with your local media to help raise awareness in your area.
You can also Light Up Your Home! Want to raise awareness with your neighbours? Buy a green light bulb (or use your Smart light) and turn your door or windows into a green awareness raiser! Talk to your local community about why your home has gone mito green!
See who’s lighting up
Check out our global map to find participating locations or add your own. Let’s fill the world with green and raise awareness together.
Together we can shine a light on mitochondrial diseases. Every light matters. Every voice helps. Join us this September and be part of something that makes a difference.
This beautiful visual spectacle aims to spark conversations, raise awareness, and ignite a sense of solidarity within our communities.
Join us and ask your local monuments to participate in the campaign.
Raise awareness by sharing your photos on social media using #LightUpForMito and #WorldMitoWeek2025
Resources
Personal Stories
"Faces of Mito" - Read inspirational stories of people's experiences with mito.
We want to shine a spotlight on the strength of people with mito and their families. We share many stories on our Facebook and Instagram throughout the year. If you want to be part of the campaign, please email us with your stories and photos.
Get involved
Make a difference during the world Mitochondrial Disease Week 2025 by actively participating in or organising a Mito Week event.
Every contribution counts towards making a long-lasting change!
Whether you host a small or big gathering, start a local support group, or find unique ways to raise awareness about mitochondrial diseases, let's spread the word and make 15 - 21 September an unforgettable week!
How else can you get involved?
- Share our logo
- Use mito resources and translate/adapt them to your digital channels
- Share your activities on the social channels
- Get involved in hosting your Light Up for Mito and read more here
- Get involved in TK2d Awareness Day
- Get involved in LHON Awareness Day
- Use the official #WorldMITOWeek2025 and #DecodeTheMitoPuzzle on social media
- Spread the word and make 15-21 September a memorable week!
World Mitochondrial Disease Week 2025 was hosted by International Mito Patients (IMP). We support the efforts of our members around the world to raise as much awareness as possible!
Get in touch
Please contact Jo for information: jodebry@mitopatients.org
Please send information about your events, Faces of Mito and Light Up for Mito activities to: info@mitopatients.org
If you have any questions or a confirmed Light Up for Mito monument, please enter your details below and we will respond ASAP.
If you are looking to register an awareness event, click here.