Our story
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 improves diagnosis, care, and innovation for people living with Rare Eye Disease (RED).
Our goal
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.
Our approach
To unite key stakeholders in driving coordinated, patient-centered, and evidence-based action on rare eye diseases (RED).
How we drive change:
Raise awareness of retinal health issues in the European Parliament via a Special Interest Group
Support a WHO resolution recognizing retinal degeneration as a global health priority
Advocate for a long-term EU funding for vision research
Strengthen collaboration between ERNs, patient organisations, and EU institutions
Ensure research and clinical care are guided by patient-centered outcomes.
Expand Act4RED’s reach through international partnerships and global alignment.
What are REDs?
REDs include conditions such as, Retinitis Pigmentosa (RP), Stargardt Disease, Usher Syndrome, Leber Congenital Amaurosis, Choroideremia (CHM). The scope of the ERN-EYE network covers more than 900 diseases.
Why your support matters?
Help us spread Act4RED to Stop the Loss and ensure innovation for rare eye diseases is built around real patient needs and meaningful measures of impact.