Retina Youth Conference 2020 – Day 1

The Retina International Team were delighted to welcome 123 attendees to our virtual Retina Youth Conference  on August 24th from 12:00 CET. The event was hosted by Interim Chair of the Retina Youth Council, Marina Sutter, and entailed webinars from ophthalmology specialist Kirk Stephenson from the Mater Misericordiae University Hospital in Dublin Ireland, Ben Shaberman, Senior Director of Scientific Outreach with Foundation Fighting Blindness (US), and finally from Marina Sutter, who is presently a student of German and residing in Germany.

The conference opened with a few words from our esteemed President, Ms Christina Fasser, who expressed a call to action for young people to actively engage in patient organisations and networks; “[The] Youth Council, that’s for you, and you have to make it happen…[it is] extremely important that young people support each other”.

After a warm introduction from Marina, ophthalmologist Kirk Stephenson took to the virtual floor to provide the background to genes, inheritance, and diagnosis of retinal degenerative diseases. Questions from the floor raised issues such as timeliness of genetic testing to facilitate accurate diagnosis and therapeutic intervention.

Ben Shaberman shared with us an overview of the current state of therapeutic research, highlighting the 40+ clinical trials presently ongoing to tackle retinal degeneration. He again reiterated the essentiality of genetic testing, which can incur a change of clinical diagnosis, access to clinical trials, and identification of appropriate therapies. Ben shared with our attendees recent advancements in gene therapies, stem cell therapies such as ReNeuron, as well as technologies like Bionic Sight. He also highlighted some very promising retino-protective therapies in development, namely a powerful antioxidant by the name of Nacuity, a conal protective agent called sparing vision, and also Pro QR, an RNA therapy.

After a short break, Marina Sutter joined us once more to discuss research and the role of Public & Patient Involvement (PPI). This refreshing and insightful talk discussed the history of research, research bias, and the need for more widespread practice of PPI in research. “Research is a living, breathing thing. It grows with us.” says Marina, using the Bronfenbrenner socioecological model to describe how change must happen from within before approaching it from an external policy level. She highlighted the need for a shift of paradigm for research and patient communities, and developing a new, collaborative research journey with patients.

The e-conference will commence on August 25th, where attendees will focus on forward thinking ideas, living their most fulfilled lives, and how to take action.

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