World Retina Day 2024
September 28th
This is an important day for the retina community at large to raise awareness of Inherited Retinal Degenerations (IRDs) as well as age-related and common diseases of the retina including Age-related Macular Degeneration (AMD), Geographic Atrophy (GA) and Diabetes Related Eye Diseases (DEDs).It also provides an opportunity to bring the retina community together to discuss opportunities and challenges faced by the community at a national and a global level.
This World Retina Day, Retina International (RI) will highlight the importance of Patient Perspective in Decision Making and will host a webinar on Friday, September 27th at 12pm CET.
Please contact Andrew Ryan Andrew.ryan@retina-international.org to register for the webinar.
Over the past year RI organised a series of online workshops with member organisations to establish policy priorities and appropriate mechanisms to educate patient representatives in the retina space to engage confidentially and in an informed manner in decision making forums around the availability, access and affordability of care and treatment.
Two in-person workshops were held at the Retina International World Congress, which was held in Dublin in June 2024. Here patients, clinicians, researchers as well as industry and policy makers discussed examples of positive engagement while identifying gaps in knowledge and capacity that prevent participation in decision making as well as methods to address them.
The first workshop aimed to provide patient leaders’ perspectives on the challenges faced by people living with GA and treatment expectations of current and potential therapies. GA is an advanced form of dry AMD, and impacts over 5 million people globally.
GA leads to progressive, irreversible vision loss. Despite the proven significant economic impact as well as high unmet need, there is limited awareness among stakeholders resulting in inadequate research investment and challenges in valuing the impact of emerging therapeutic options.
Findings from this study are available as a preprint here and will be presented at our upcoming webinar.
The second workshop examined the interpretation of value from patient’s perspective, challenges in the development of innovative medicines such as cell and gene therapies for IRDs and the challenges involved in bringing a therapy from the bench to the bedside.
Dr Nabin Paudel, Head of Research at RI said ‘The need to incorporate patient perspectives throughout the drug development pathway from pre-clinical studies to clinical trial designs, regulatory and health technology assessments decisions is critical. At RI we are focused on bringing our global community together to discuss the importance of representation and to work with all our patient led organisations to develop bespoke training modules, such as the Retina International Education Hub, to better understand the research journey and where the patient voice is needed on that continuum’.
The study findings are currently under review by an academic journal and will soon be shared with all member organisations.
On World Retina Day 2024, RI encourages its members and stakeholders to get involved in raising awareness for retinal degenerations in any way you can, whether that be organising an event or sharing content on social media
