Growing Recognition of the Patient Voice in Research
A meaningful shift is taking place in the rare disease research landscape: patient input is no longer viewed as optional, but is beginning to be seen by many an essential part of high‑quality science. In recent weeks, IMP has been approached by several research teams preparing funding applications for programmes such as those supported by ERDERA and Horizon. What stands out is how consistently these applications now require — and genuinely value — the involvement of patient organisations from the earliest stages of project design.
This change reflects a deeper understanding that people living with mitochondrial disease bring expertise that cannot be replicated in laboratories or clinical settings. Their insights shape research questions, highlight unmet needs, and ensure that proposed solutions are grounded in real‑world experience. For IMP, being invited into these conversations signals real progress: a recognition that the patient voice is central to meaningful, impactful research.
We are hopeful that the projects we are partnering on will secure funding and move forward. Each proposal contributes a vital piece to the wider puzzle of understanding, diagnosing, and treating mitochondrial diseases. As the research landscape expands, IMP is proud to represent each of our members and the global patient community as a whole in helping to guide this new era of collaboration.