ERN-EYE was pleased to participate in the European Conference on Rare Diseases (ECRD) 2026, held in Prague, Czech Republic on 3 & 4 June 2026. As the largest patient-led policy event dedicated to rare diseases in Europe, ECRD brought together people living with rare diseases, patient advocates, policymakers, healthcare professionals, researchers and industry representatives for two days of insightful discussions and collaboration.
The conference focused on shaping the future of rare disease research, treatments, data sharing and healthcare across Europe, highlighting the importance of strong partnerships between all stakeholders.
During the event, the ERN-EYE team, represented by Soline Petit, presented a poster entitled “How to Help People with Visual Impairment in Public Environments?”. The poster showcased the development of ERN-EYE’s three-minute awareness video, created in close collaboration with expert clinicians and patient representatives.
The video demonstrates how simple and respectful actions can make everyday interactions easier for people with visual impairment while fully preserving their independence and autonomy.
ERN-EYE would like to thank EURORDIS – Rare Diseases Europe for the invitation and the opportunity to share this work with the wider rare disease community. We look forward to participating in future editions of ECRD.
