Retina International’s new campaign, Patient Voices: Deciding Our Futures, is an initiative dedicated to protecting and promoting the patient voice in health innovation.
For decades, the retinal community has worked tirelessly to secure a place for patients at the decision-making table; shaping research priorities, influencing policy, and ensuring that innovation reflects the realities of those it seeks to serve.
However, emerging legislative changes in the EU and beyond now threaten to reduce or even remove the formal inclusion of patient representatives from health innovation frameworks. At Retina International, we believe that silencing the patient voice would be a serious setback, not just for our community, but for innovation itself.
Our campaign stands firmly in solidarity with the joint EURORDIS and European Patients’ Forum initiative Keep Patients Voting, which calls on policymakers to safeguard the participation of patient advocates in decision-making processes across health and research.
When patients are included, innovation is stronger, more relevant, and more equitable. The lived experiences of individuals affected by retinal diseases provide critical insights that shape more effective policies, improve research outcomes, and drive meaningful change.
“The patient voice has proven its value again and again. When patients contribute to decisions, research becomes more focused on real needs, and innovation delivers tangible benefits to the people it’s meant to serve.”
– Avril Daly, CEO of Retina International
For Patient Voices: Deciding Our Futures, we are proud to feature Professor Isabelle Audo, Institut de la Vision, France:
Image description:
Graphic titled “Patient Voices: Deciding our Futures” from Retina International. It features a portrait of Professor Isabelle Audo, MD, PhD, from the Institut de la Vision. The quote reads: “Patients are the center of our work. They are our preoccupation. They are the reason why we are where we are!” The Retina International logo appears in the top right corner, and a yellow banner at the bottom reads #KeepPatientsVoting.
“Patients are the center of our work; they are our preoccupation and the reason why we are where we are.”
– Professor Isabelle Audo, M.D., Ph.D.
As part of our ongoing Patient Voices: Deciding Our Futures campaign, we’re proud to feature Professor Isabelle Audo, Institut de la Vision, France, ERN-EYE member.
Through her research on the molecular pathways involved in eye diseases, from gene to therapy, Professor Audo exemplifies how innovation thrives when patients remain at the heart of research.
When patients contribute to shaping policy, the outcomes of research and care reflect real needs and lived experiences. Decisions made about health innovation must include those most affected, the patients and families whose lives depend on them.
As legislative discussions continue across Europe and beyond, we stand with leaders like Professor Audo to ensure that patients remain at the table, helping to shape a future where innovation truly serves the people it’s meant to help.
Her message reinforces why we must continue to #KeepPatientsVoting and ensure that the patient voice remains central to shaping health innovation worldwide.
Follow the campaign using #PatientVoices and #KeepPatientsVoting, and stay engaged as we amplify the voices that continue to shape the future of retinal research and care.
