Retina International’s 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.
For Patient Voices: Deciding Our Futures, we are proud to feature Marina Leite Brandão:
Image description:
A social media graphic titled “Patient Voices: Deciding Our Futures.” On the left, a quote reads: “Including patients in medical research helps define meaningful endpoints and promotes equity in access to care for those living with rare retinal diseases.” Beneath the quote is the name and roles: “Marina Leite Brandão, Grupo Virtual Stargardt Brazil, RI Board Member, RI Youth Council Secretary.” On the right, there is a black-and-white photo of Marina Leite Brandão smiling, standing with one hand on her hip and holding a white cane. The Retina International logo appears in the upper right corner. At the bottom, a yellow banner displays the text “#KeepPatientsVoting.”
Marina Leite is a deeply committed advocate whose work continues to strengthen and connect the global retinal community.
Marina lives with Stargardt Disease and has spent nearly a decade engaging with patient organisations worldwide. Her advocacy is rooted in lived experience but driven by a passion for inclusion, innovation, and ensuring that young people have a meaningful voice in shaping the future of retinal health.
Based in Brazil, Marina serves as a Coordinator for Grupo Virtual Stargardt (Brazil) and is a Trustee at Stargardt’s Connected (UK). She also collaborates closely with Retina Brasil, Retina Minas, and Retina Iberoamérica, helping to build stronger ties across Latin America and beyond.
Within Retina International, Marina contributes her leadership as a Board Member and serves as Secretary of the RI Youth Council, where she helps amplify the perspectives of young people living with inherited retinal diseases.
Her background in innovation and public policy, combined with her experience in inclusion-focused initiatives, makes her a powerful voice for ensuring that patient perspectives are reflected in decisions that shape research, services, and long-term health policy.
Marina’s work reminds us that when patients, especially young advocates, are empowered to lead, our global community becomes stronger, more connected, and better prepared for the future.
Retina International proudly stands with the EURORDIS and European Patients’ Forum initiative #KeepPatientsVoting, calling on policymakers to safeguard patient participation across health and research.
Because when patients are included, innovation becomes stronger, more relevant, and more equitable.
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.
