Our Story

Millions of people all over the world are living with severe vision loss, a significant proportion of which is due to Retinal Dystrophies or Retinal Degenerations as they are also known. 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.

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 puropse 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 establsih 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 Retina 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 gloablly. 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.

As the global umbrella group representing the voice of patients living with Retinal Dystrophies RI utilises emerging technologies to deliver up to the minute communication bringing the  community closer than ever before.

Through this  new website RI will diseminate news and information to its members and  stakeholders in the research and medical professions as well as policy-makers and industry.

The value of providing information and support to people with Retinal Dystrophies cannot be underestimated. RI has done this for many years through the members section  which is aknowledged as a valuable resource to people who are dealing with challenging, life altering conditions.

In order to stay on top of all breaking news and developments and to build the members section on this new site, RI will need your input and ideas to  ensure all its communications platforms are accessible, informative and useful  to you and to your organisations in achieving your aims.

RI is here for you so let us know your thoughts and suggestions and how the organisaiton can better serve the needs of its membres all over the world. 

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