Topic: The Patient Voice and Innovation
Date/Time: October 9, 1:30 PM UK / 2:30 PM CET / 8:30 AM EDT
Duration: 1 Hour
Moderator: Avril Daly
Panellists:
- Silvia Cerolini (Eyes on the Future, Coordinator RDH12 Alliance)
- Christina Fasser (Past President, Retina International)
- Ben Shaberman (VP Science Communications, Foundation Fighting Blindness)
- Russell Wheeler (Patient Advocate, LHON Society)
- Kirk Stephenson (Consultant Ophthalmic Surgeon and Retina Specialist, Mater Dublin)
Registration is required for this free online event.
This World Sight Day, we will highlight the milestone collaboration between the RDH12 alliance and Opus Genetics and how powerful the patient voice can be in the field of innovation.
This webinar will be recorded and sent to all registrants and the RI membership after the event.
Don’t miss this opportunity to hear from our panel on the power of the patient voice in driving innovation.
Panellist Bios:
- Silvia Cerolini (Eyes on the Future, Coordinator RDH12 Alliance)
Silvia Cerolini is CEO of Eyes on the Future and a non-for-profit organization accelerating research on Inherited Retinal Dystrophies (IRD) causing progressive sight loss in children. She is also the coordinator of the global RDH12 Alliance.
- Christina Fasser (Past President, Retina International)
Christina Fasser is an ePAG representative and former President of Retina International. Learn more about Christina’s advocacy work here.
- Ben Shaberman (VP Science Communications, Foundation Fighting Blindness)
Ben has been communicating retinal disease science and research for Foundation Fighting Blindness for over 20 years. He hosts the Eye on the Cure podcast series, which is available on most major podcast platforms. In addition, he reports on the latest research advancements for the Foundation’s electronic and print publications.
- Russell Wheeler (Patient Advocate, LHON Society)
Russell Wheeler is a Volunteer Patient Advocate at ERN-EYE, EURORDIS and Leber’s Hereditary Optic Neuropathy Society. He is active as a volunteer in the non-profit sector in Europe focused on rare diseases and especially rare eye disease. His background is in finance and business strategy.
- Kirk Stephenson (Consultant Ophthalmic Surgeon and Retina Specialist, Mater Dublin)
Kirk Stephenson is a Consultant Ophthalmic Surgeon and Retina Specialist at Mater Private Network, Dublin. He is a Consultant Ophthalmic Surgeon, at Temple Street, Children’s Health Ireland. Originally from Vancouver, he undertook his ophthalmology residency in Ireland. He helped develop the Irish national program for IRDs (Target 5000) and remains involved with this clinical and academic partnership.
Moderator bio:
- Avril Daly (CEO, Retina International)
Avril Daly is CEO of Retina International. Avril has worked in health policy for rare and common eye disease since 2000 and was CEO of the Irish NGO, Fighting Blindness for eight years. She was Chairperson of Rare Disease Ireland from 2006-2019. In 2009 she was elected to the Board of Directors of Rare Disease Europe – EURORDIS, and is now the President of the organisation.
