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What We Do
As a global umbrella organisation, Retina International’s work is centred around supporting and enhancing the activities of its membership.
This helps to ensure a common vision exists within the patient-led retina community; to guarantee equitable, immediate and appropriate access to essential healthcare for all people living with retinal conditions.
RI believes that education leading to patient participation in research, updating and influencing policy and producing further education and advocacy resources is key to successful innovation.
In this way, RI’s work is guided by three fundamental pillars which underline everything that the organisation does:
1. Educate
This is our Outreach and Engagement pillar.
Education is a key pillar for RI as we strive to increase active patient participation within the retina community, contributing with a unique perspective as people with the lived experience in Research & Development and policy planning and decision-making. RI aligns its work with this pillar in preparing and sharing resources around retinal dystrophies, including its informational toolkits on:
Age-related Macular Degeneration
In this way, it is a strategic objective of RI to ensure that members are not only represented in all areas of policy development that concerns them and the communities they serve, but they are educated with the most up to date information to allow them make the most valuable contribution on behalf of all patients affected by retinal disease.
Additionally, RI also hosts the Retina Youth Conference, where young people within the community have the opportunity to listen and engage with experienced patient members from around the globe, as well as learn from expert scientists and advocates, and become inspired and well-informed activists to bring about positive change for people in their local region, and the retina community at large.
2. Participate
This is our Advocacy and Policy Pillar
The Participate pillar describes RI’s action and involvement within advocacy to represent its membership on an international stage, and ensure a well-informed, involved and united community through the provision of a comprehensive framework assisting RI’s members in the creation and implementation of advocacy strategies to advise the actions of stakeholders in making positive and impactful changes.
RI leads and participates in many policy actions, particularly around the area of genetic testing for Inherited Retinal Degenerations (IRDs) for which we launched our Know Your Code portal site in 2020. Awareness raising and policy actions concerning the ageing retina are housed in our Retina Action site, where we collaborate with a global coalition of vision and ageing groups.
To achieve successful advocacy outcomes, patients must participate in actions that can influence decision makers and result in positive change. Education will enable greater patient participation as outlined and it will develop our membership base to be informed actors in the provision of advice to stakeholders, in policy development and the commissioning of research at a national and supranational level.
3. Innovate
This is our Research Pillar
RI understands that lab-based research dedicated to developing innovative treatments and cures for retinal dystrophies, as well as efficient systems which encourage the swift but safe transition of these therapies from bench to bedside, is vitally important to the patient retina community. In this way, RI’s membership have been leading contributors to therapeutic development for over 50 years.
However, RI recognises that Innovation refers not only to the traditional lab based and translational research, but reflects the need for socio-economic research to make the case to support and investment in the development of treatments, and provision of access to them.
RI leads in innovative data generation that underpins all of our work; conducting and publishing social research – such as our Cost-of-Illness studies, that place the patient experience at the centre of global conversations on retinal degenerative diseases and their emerging therapies. RI’s central research focus is to generate data and evidence outlining the socio-economic burden of retinal dystrophies, and to use this real-world information for RI and its members to grow as informed advocators, highlighting the need for greater access to genetic testing and diagnostic screening, a more appropriate clinical trial process and ultimately, global and equitable access to therapies for retinal dystrophies.