Act4RED

Act4RED wants to Stop the Loss of vision.

This podcast is to mark Rare Disease Day 2026. Hosted by Avril Daly, CEO of Retina International.

Panel: Hélène Dollfus, Bart Leroy, and David Keegan.

Act4RED is a joint initiative of Retina International, ERN‑EYE, Foundation Fighting Blindness, and the Ocular Diseases Forum, who are all bringing together patients, clinicians, and researchers to drive evidence‑based, patient‑centred action that improves diagnosis, care, and innovation for people living with Rare Eye Disease (RED).

We are calling to Stop the Loss of vision and working to improve outcomes for people affected by inherited retinal degenerations, anterior segment disorders, neuro‑ophthalmic conditions, and paediatric rare eye diseases.

Act4RED focuses on preserving vision by generating strong evidence, demonstrating the high unmet need, and raising awareness among decision‑makers across health ministries, research bodies, and regulators. It highlights the delays people face in diagnosis, access to specialist care, rehabilitation services, and emerging therapies.

The initiative ensures that the unique needs of the patient community shape policy, research, and care pathways. This includes promoting a holistic approach that integrates mental health, psychosocial support, and lifelong care. It also underscores the importance of fit‑for‑purpose indicators, meaningful outcome measures, and embedding patient value early in the development and evaluation of new innovations.

By bringing together researchers, clinicians, and patients, Act4RED amplifies the need for coordinated policy action at above‑country level and drives solutions that can genuinely improve the lives of people living with rare eye diseases.