Understanding mitochondrial disease: your voice matters
Although there is currently no cure for mitochondrial disease, ongoing research is bringing us closer to breakthroughs. The more we learn about mitochondria, the better we understand how they function, and how we can develop effective treatments for mitochondrial dysfunction.
But that research can’t happen without people like you. Here at The Lily Foundation, we believe that to find new treatments for mitochondrial disease, it’s important to involve people with lived experience of the condition. We want to include and strengthen the patient voice in mitochondrial research because you’re the ones living with the disease every day. Your perspective will allow researchers to gain a better understanding of patient needs.
Patient and Public Involvement and Engagement (PPIE) is about you having your say in mitochondrial disease research. As part of the mito community, you can help guide the direction of research and shape the future of treatments and care.
Watch our video to hear Susan’s story and discover why she’s chosen to take part in mitochondrial research.
Every step brings us closer to understanding mitochondrial disease, finding treatments and, ultimately, a cure. Whether you’re a patient, parent or caregiver, your insights and experiences matter. Your voice could make a real difference – so why not get involved?
Stay informed: the latest mitochondrial research updates
As new treatments and findings emerge, it’s essential to stay updated. Whether you’re participating in research or simply want to remain informed, you can keep track of the latest developments through The Lily Foundation’s newsletters, filled with regular updates on mitochondrial disease research as well as the latest events, personal stories and lots more.
By staying connected, you’ll always be aware of new opportunities to get involved and support the development of potential treatments for mitochondrial disease.
Keep in the loop
