Last week, Retina International attended the 13th European Conference on Rare Diseases and Orphan Products (ECRD 2026) in Prague, joining more than 500 in-person and 300 online participants from across the rare disease community.
Organised by EURORDIS – Rare Diseases Europe and Orphanet, ECRD brings together patient organisations, researchers, clinicians, industry representatives, policymakers, national health ministries, the European Commission, the European Medicines Agency (EMA), and the World Health Organisation (WHO) to discuss the future of rare disease policy, research, care, and innovation.
Representing Retina International, our CEO Avril Daly and Head of Communications Claire Duggan participated in a range of workshops, discussions, and conference sessions focused on some of the most pressing issues facing the rare disease community today.
Ahead of the main conference programme, Avril and Claire took part in workshops exploring the World Health Assembly’s Global Action Plan on Rare Diseases, an initiative that has significant relevance for people living with inherited retinal diseases (IRDs) and other rare conditions worldwide.
As President of EURORDIS, Avril opened and closed the conference and co-chaired a high-level meeting of EU Health Ministries alongside Czech Minister for Health, Adam Vojtěch. Representatives from 15 of the European Union’s 27 Member States participated in discussions focused on the development of a European Framework for Rare Diseases. Key topics included data sharing, clinical trials, the European Biotech Act, and newborn screening programmes.
Retina International also presented new research during the conference. Claire Duggan delivered a poster presentation on behalf of the research team titled:
“Emotional and Psychological Wellbeing in People Living with Inherited Retinal Degenerations (IRDs): Results of a Multinational Survey.”
The study explored the emotional and psychological impact of living with inherited retinal diseases and highlighted the importance of recognising mental wellbeing as a critical component of patient care, research, and policy development.
Throughout the conference, one message remained consistent across sessions and discussions: patient voices must remain at the centre of decision-making. Whether discussing research, innovation, data, healthcare systems, or policy, meaningful patient involvement continues to be essential to achieving better outcomes for people living with rare diseases.
We would like to thank EURORDIS and Orphanet for another excellent conference and look forward to continuing these important conversations in the months ahead.
