What is IMPACT?
IMPACT, The Lily Foundation’s Mitochondrial Patient Advisory Committee, is a virtual committee made up of individuals affected by mitochondrial disease. These are people who know first hand the challenges of living with the condition, so their insights are invaluable in shaping research, clinical care and the development of treatments.
Why is IMPACT important?
Whilst scientists, doctors and researchers possess extensive knowledge about mitochondrial disorders, they lack one crucial insight – what it’s like to live with the disease. The lived experiences of our mito warriors, whether through their own care or that of a loved one, provide a unique and invaluable perspective.
There’s also an important moral aspect to consider – those living with, or who have lost someone to, mitochondrial disease have the right to be involved in the research that could be shaping their future. Being part of IMPACT empowers them to share their stories and contribute their views, ensuring they have a voice in projects that could benefit the wider mito community.
How does IMPACT work?
IMPACT members are invited to share their insights through virtual meetings and discussions, contributing directly to research and development projects. By being part of our panel, their input can guide clinicians and researchers, helping them to shape ideas that are not only relevant but also good value for money and genuinely useful to the mitochondrial disease community.
Why we’re excited
Listening to mitochondrial disease patients and understanding their feelings about the condition has always been central to our mission. No one understands mitochondrial disease better than those who are affected by it, and they’re uniquely placed to influence the design and delivery of the care and support they receive.
This is an incredible opportunity for the mito community to drive real change. Together we can ensure that the research taking place not only advances but also reflects the priorities of those it seeks to benefit.