Who We Are

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 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 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 could work together to promote the needs of the patient community internationally.

How Retina International is Governed

Since 1978, RI has been led by a voluntary President elected by the General Assembly (GA) and supported by a Management Committee (MC) elected from the membership. A CEO collaborates with RI’s governing bodies in the development and implementation of the organisation’s strategic goals. The secretariat delivers up to the minute communications to its member organisations and works with them to develop advocacy tools and strategies based on agreed objectives. A core function of the RI secretariat is to produce education and capacity building tool kits based on consensus to support member organisations and to build on existing relationships with other stakeholders in the scientific, medical and health policy fields.

Our Structure

The President and the CEO carry out the affairs of the organisation in conjunction with three governing bodies as follows:

  • The General Assembly – GA

  • The Management Committee – MC

  • The Scientific Medical Advisory Board – SMAB

RI is an organisation run by people living with retinal dystrophies for people living with retinal dystrophies and all those affected, be they family members or those who provide care. We want to ensure we continue to deliver the best information to you and your organisation on the development of retinal research, on access to diagnosis, care pathways, clinical trials and existing and emerging therapies.

We will continue to utilise every opportunity to develop useful communications tools to reach patients living with retinal dystrophies and work with a multistakeholder group of internationally based advocates to ensure our collective voice is heard in all matters that affect our community.

We can only do this with your help, and we ask you to share your thoughts on how we can improve our service to you and how we can best support you in providing you with the information to be empowered patient advocates.

All governance documents including Financial Information 2017 and 2018 reported to the General Assembly at its meeting in February 2018 can be found in PDF-Format and downloaded here:

Finances 2017 inclusive Audit report

Finances 2018 inclusive Audit report

The activities of Retina International are supported through membership fees and unrestricted grants from our corporate supporters: Novartis, SparkTx, Retina Implant AG

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Retina International
Ausstellungsstr. 36
8005 Zurich

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This site has been supported through an unrestricted educational grant from Novartis

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