Research is the key to finding treatments and a cure for mitochondrial disease, and we believe the real experts are the people living with the disease – you. You’re the mito heroes, and now you can use your unique insights to make your IMPACT.
What is IMPACT?
IMPACT, The Lily Foundation’s Mitochondrial Patient Advisory Committee, is a virtual committee of individuals affected by mitochondrial disease. By sharing your experiences, you can help shape research, clinical care and treatments that truly reflect the needs of the mito community.
As part of IMPACT you can:
Share your own experiences of mitochondrial disease to guide research priorities.
Test new tools like registries and clinical databases.
Review and provide feedback on documents to ensure they’re patient-friendly.
Influence clinical trial designs or research ideas.
Participation is flexible – you choose how often you get involved and which projects interest you. It’s completely voluntary, and you can opt out at any time.
Please note: being part of IMPACT is about guiding research and care, not participating in clinical trials.
Why should I join IMPACT?
Your voice matters: Researchers and clinicians may understand the science around mitochondrial disease, but they need your lived experiences and insight to know what it’s like to live with the disease, and what truly matters to patients and families.
Shape the future: Your input can help shape the ideas of researchers and clinicians, ensuring their work is relevant, impactful and valuable to the mito community.
Be empowered: As someone who lives with mitochondrial disease, this is your chance to share your story to influence the research and care that impacts your life. At the same time, you may gain new skills and experiences.
Watch this video to find out why Adam’s joined IMPACT.
If you’d like to get involved, simply click on the sign-up box below, fill in your details and we’ll be in touch. Opportunities are advertised via email, but availability may vary based on demand. We’ll do our best to match you with projects that are right for you. If you’d like more information, or have any questions about IMPACT, please email [email protected].
