We’re very pleased to share encouraging news following last week’s agreement by EU institutions on the reform of the General Pharmaceutical Legislation, and we want to start by saying thank you.
Thank you to everyone across the Retina International community who engaged with, supported, and shared our Patient Voices: Deciding Our Futures campaign, which we launched on World Sight Day. Your participation, stories, and public support helped reinforce a clear message: patients must remain at the heart of health decision-making.
Our campaign was created in response to real concerns that patient voting rights and formal involvement in EU health policy could be weakened. We invited patient advocates and clinicians to speak in their own words about why patient voices matter, not just symbolically, but in shaping better research, better policies, and better outcomes.
The response was incredibly strong. Members, partners, and clinician members of the RI Scientific and Medical Advisory Board put their names and faces behind the campaign. That authenticity mattered. It made the case for patient involvement clear, credible, and human, and it directly supported our advocacy efforts.
We’re encouraged to see that the agreed pharmaceutical reforms reflect many of the priorities long championed by the rare disease community, including stronger patient involvement. RI CEO, Avril Daly, was in attendance at a High Level Meeting on Rare Diseases in Brussels, in her capacity as President of Eurordis, as the agreement on the Pharma package was reached:
“Today’s agreement is a momentous advance for people living with rare diseases. By creating the conditions to stimulate innovation – including for the rarest and most complex conditions – Europe has taken an important step forward.”
Avril also highlighted practical changes that will make a real difference for patients:
“Shortened EMA timelines and strengthened supply safeguards should help ensure medicines reach patients faster.”
This matters well beyond Europe. The EU often sets the tone globally for how patients are included in health decision-making. Had patient voting rights been weakened here, it would have made it far harder to defend them elsewhere. Protecting patient participation at the EU level helps safeguard it worldwide.
Our campaign has stood firmly in solidarity with the joint EURORDIS and European Patients’ Forum initiative Keep Patients Voting: 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.
Once again, thank you to everyone who supported RI’s Patient Voices: Deciding Our Futures campaign. Your engagement showed that when patients and clinicians speak together, change is possible, and health innovation is stronger for it.
