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Our Values
Retina International is a global patient led membership organisation. As pioneers in patient driven research for five decades, we strive for excellence in our work in the development of validated education platforms and effective participation that can lead to better outcomes through innovation. As a highly networked community, our objective is to promote retina research through the engagement and education of our growing patient community and by developing robust evidence-based advocacy tools to bring about positive change. We believe in structured collaboration inclusive of all stakeholders in order to address the unmet need of patients affected by retinal disease, by employing a professional approach to all that we do.
History
For 42 years, Retina International (RI) has been the voice of patient-led voluntary groups, charities and foundations worldwide who fund and support retinal research that is seeking a cure for inherited and acquired retinal diseases.
The patient-led Retinal community started in earnest with the formation of the Foundation Fighting Blindness (FFB) in 1971 by Gordon and Lulie Gund, Bernard and Beverly Berman, and other dedicated patient leaders. The purpose of the organisation was to find cures for retinal diseases at a time when very little was known about what we now understand to be complex genetic conditions. Throughout the 1970s, other countries around the world began to establish organisations based on this model. These groups, also formed by individuals and families affected by these conditions, learned that by funding basic research into Inherited Retinal Diseases (IRDs) through charitable donations, much could be learned and as state funding for rare diseases was difficult to come by, this important nurturing of retinal research could, if successful, could lead to securing larger state grants, enabling further discoveries.
In the days before every home had a PC, or even a phone, international communication was difficult. Finding ways to reach out globally was essential in what was then a small niche community of patients and researchers. Retina International (RI) was formed in 1978 to act as a tool to deliver the most up to date information on retinal research and development globally. RI holds scientific conferences for a lay audience in a different country every two years; the Retina International World Congress (RIWC). The RIWC brings the community together to share experiences, learn from each other and to find ways in which they can work together to promote the needs of the patient community internationally.
Millions of people all over the world are living with severe vision loss, a significant proportion of which is due to retinal degenerations. For individuals and families who have been diagnosed with a retinal dystrophy, be it rare, genetic and inherited, or age-related, access to relevant, detailed and clearly understandable information is essential.
Retina International strives to improve the lives of these people living with retinal conditions by making this information timely, accurate and accessible. Additionally, we lead and support national and global evidence-based advocacy campaigns to improve healthcare and treatment access for people living with retinal conditions.