Reflecting on Rare Disease Day

This year’s global Rare Disease Day theme is “More than you can imagine,” and we are deeply grateful to have seen this vision brought to life at the recent GSNV Rare Disease Day event.

We were honored to join leading patient advocates and clinicians on a panel chaired by Monica Ferrie, CEO of GSNV and Chair of the InGeNA Consumer Advisory Group. Together, we explored the question: “What does healthcare look like in 2035 for rare disease patients?” The audience’s answer was clear: a future of care that is connected, responsive, and truly patient centred.

At InGeNA, we want to extend a massive thank you to the patients, researchers, and clinicians who collaborate so closely with us. Your lived experiences are the foundation of our work. You drive our commitment to advocating for the structural enablers, like streamlined regulation and modernised reimbursement, that will turn today’s rapid advancements in precision medicine into equitable, everyday care.

Rare disease patients are so much more than their conditions. They deserve systems built specifically to serve them. Thank you to GSNV for hosting such an inspiring day, and to everyone who attended for recharging us and reminding us of our Why.