Rare Disease Day: Act4RED and Stop the Loss of Vision

Act4RED logo

 

Act4RED is a joint initiative of Retina International, ERN-EYE, the Foundation Fighting Blindness and the Ocular Diseases Forum, which brings together patients, clinicians, and researchers to improve diagnosis, care, and innovation for people living with Rare Eye Disease (RED).

Our mission is clear: Stop the Loss of vision by driving coordinated policy action, accelerating research, and ensuring patient needs sit at the heart of care.

To mark Rare Disease Day 2026, we have recorded a podcast to explain Act4RED. Led by Avril Daly, with expert insights from Prof. Hélène Dollfus, Prof. Bart Leroy, and Prof. David Keegan, you can learn more as they unpack why rare eye diseases remain underdiagnosed and underfunded, and what it will take to change that.

You can access the podcast on the following platforms:

Spotify

Apple Podcasts

YouTube


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