Mitochondrial disease affects people of all ages, backgrounds, and communities across the globe. There are hundreds of different types of rare mitochondrial diseases, many of which are individually rare or ultra-rare. Collectively, an estimated 1 in 5,000 people live with a mitochondrial disease, equivalent to approximately 1.5 million people worldwide.^[1] Despite this, awareness and understanding remain limited in many countries, and families often face long diagnostic delays, uncertainty, and a lack of support. On average, people with a rare disease wait five to seven years for a correct diagnosis, a reality that many in the mito community know too well.^[2] Patient organisations in countries across the globe are working to change this, offering support, advocacy, and connection to those who need it most. Increasing awareness helps ensure more people affected by mito are recognised, understood, and connected to the care and community they need.

Awareness is a powerful step toward improving the lives of people living with mitochondrial disease. Many individuals spend years searching for answers before receiving a diagnosis, often seeing multiple specialists along the way. Greater awareness among healthcare professionals, policymakers, educators, and the public can help improve understanding of mito, encourage earlier diagnosis, strengthen support systems, and increase investment in research.

Mitochondrial disease can affect any organ, at any age, with any symptom making it one of the most challenging conditions to recognise.^[3] But when healthcare professionals recognise the symptoms, lives change. Better awareness creates opportunities for meaningful and lasting change.

Putting mito on the map starts with people. Every patient story, awareness activity, fundraising event, social media post, and conversation helps bring mitochondrial disease into a greater public view. Visibility matters because many people affected by mitoaffected by mito feel isolated or misunderstood. Research shows that patients with rare diseases experience significantly higher rates of anxiety and depression, in part due to the difficulty of obtaining a diagnosis and finding others who understand their experience.^[4] But when communities speak up, things change.

Patient organisations across the globe are working tirelessly to amplify these voices, connect communities, and ensure that mito is recognised in every country, every healthcare system, and every conversation about rare disease.

Together, we are putting mito on the map one story, one event, and one connection at a time.

Progress in awareness, care, support, and research depends on collaboration across the global mito community. Patients, families, healthcare professionals, researchers, advocates, and patient organisations each play a vital role in advancing understanding and improving outcomes for people affected by mitochondrial disease. By sharing knowledge, resources, experiences, and expertise across countries and communities, we can strengthen advocacy efforts and accelerate meaningful progress together. No single country, organisation, or individual can put mito on the map alone but together, we can.

The movement to put mito on the map is truly global. Across the world, patient organisations, researchers, healthcare professionals, and advocates are working together to raise awareness, improve access to diagnosis, and push for better care and research funding. From national campaigns to community fundraisers, from clinical networks to social media advocacy, people everywhere are finding ways to make mito more visible. No one should face this disease feeling alone or unseen, and through the collective power of this global community, more and more people are finding connection, support, and hope. World Mitochondrial Disease Week is one moment in that wider movement: a time to come together, amplify our voices, and remind the world that mito matters.

Advances in genetic research, newborn screening, and emerging therapies are bringing new hope to the mito community. Research into mitochondrial replacement therapy, gene therapy, and targeted pharmacological treatments is accelerating but progress depends on continued investment, global collaboration, and the participation of patients and families.[6] Studies suggest that earlier diagnosis through expanded newborn screening could significantly improve outcomes for children born with mitochondrial disease.[7] By putting mito on the map, we help ensure that research funding follows, that clinical trials reach more people, and that the next generation living with mito has more options, better care, and a brighter outlook. The future of mito depends on the actions we take today and every patient, advocate, and researcher is part of writing that story.