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 very 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 seed funding basic research into Inherited Retinal Diseases (IRDs) through charitable donations, much could be learned and, as state funding for rare disease was difficult to come by then, this important nurturing of retinal research could, if successsful, 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 also held scientific conferences for a lay audience in a different country every two years, the Retina International World Congress (RIWC) brought the community together to share experiences, learn from each other and to find ways in which they could work together to promote the needs of the patient community internationally.