Act4RED: Rare Disease Day 2026

Act4RED is a joint initiative of Retina International, ERN-EYE, Foundation Fighting Blindness and the Ocular Diseases Foru,m which brings together patients, clinicians, and researchers to improves diagnosis, care, and innovation for people living with Rare Eye Disease (RED). We are calling to Stop the Loss of Vision by improving outcomes for people affected by inherited retinal degenerations, anterior segment disorders, neuro-ophthalmic conditions, and paediatric rare eye diseases.We aim to raise awareness and visibility of these conditions, which are often underdiagnosed and underfunded and to highlight the high-unmet needs of patients to health ministries, research bodies, and regulators.We advocate for coordinated policy action at EU global levels, and to promote research, innovation and investment in retinal health.Through our actions we aim to, improve access to specialist care, rehabilitation, and emerge therapies, and ultimately enhance the quality of life for individuals and families affected by retinal degenerations.