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 Dr Robert Koenekoop, Montreal Children’s Hospital and McGill University:
Image description:
Graphic titled “Patient Voices: Deciding our Futures” from Retina International. It features a portrait of Dr Robert Koenekoop. The quote reads: “I support RI and the patients’ right to speak and make their own decisions and act as advocates for new treatments and for lifestyle changes.” The Retina International logo appears in the top-right corner, and a yellow banner at the bottom reads “KeepPatientsVoting.”
“I support Retina International and patients’ right to speak, make their own decisions, and act as advocates for new treatments and for lifestyle changes.”
– Dr. Robert Koenekoop, MD, PhD, MSc, FRCS(C), FARVO
As part of our Patient Voices: Deciding Our Futures campaign, we’re honoured to feature Dr. Robert Koenekoop, a clinician-scientist and leading figure in paediatric ophthalmology and retinal genetics.
Dr. Koenekoop is Chief of Paediatric Ophthalmology at the Montreal Children’s Hospital and Professor of Paediatric Surgery, Human Genetics, and Ophthalmology at McGill University’s Faculty of Medicine and Health Research. His work bridges science, clinical care, and human connection – always with patients and families at the centre.
Dr. Koenekoop believes that empowering patients to speak for themselves is essential to driving innovation in rare eye disease research. Their voices not only guide treatment priorities but also shape the way care is delivered and how new therapies are adopted in real-world settings.
His support reflects the heart of our campaign: ensuring that patients continue to have a say in the policies, research agendas, and innovations that affect their lives.
Together, we must continue to #KeepPatientsVoting, because when patients are heard, progress follows.
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.
