On Saturday, June 20th, more than 120 people from the UK, USA, Brazil, France, Switzerland, Spain, Italy, Belgium, Ireland, Sweden, Bosnia, Cyprus, and beyond came together for an in-person RDH12 family conference to discuss clinical trials (including the upcoming Opus Genetics trial aptly dubbed “EAGLE”), various patients’ and families’ lived experiences with RDH12, as well as the science behind the disease itself.
We couldn’t have done it without the generous support of our sponsors, partners, volunteers and all the professionals who donated their time, talents, and expertise.
Special thanks to:
Retina UK, Fight For Sight, Navilens, Victa, NIHR Moorfields, The Thomas Pocklington Trust, Professor Mariya Moosajee of UCL/Moorfields Eye Hospital in the UK, Professor Bart Leroy of Ghent University in Belgium, Professor Tomas Aleman of the University of Pennsylvania in the U.S., Dr. Sally Tucker of Opus Genetics, Dr. Cheng Wang of Innovec, Professor Deniz Dalkara and Dr. Sophie Tran of the Institute de la Vision in France, Dr. Vitalii Kalynovskyi, Dr. Cecile Mejacasen of UCL in the UK
Our RDH12 Families & Patients group has now over 180 people from all over the world: USA, UK, Canada, Mexico, Brazil, Sweden, Cyprus, Switzerland, Spain, Italy, Israel, India and more.
In 2018, the first ever Patient Information Day for families affected by RDH12 LCA was held in London in partnership with Moorfields Eye Hospital NHS Foundation Trust, UCL Institute of Ophthalmology and Retina UK.
Over 50 families attended from all over the world, expanding our global community to almost 100 families from all over the world.
The RDH12 global patient group keeps growing and growing. If you are a patient or a family recently diagnosed with RDH12 Inherited Retinal Dystrophies please contact us.
Eyes on the Future is dedicated to improving peoples’ lives through high quality research. To truly meet the needs of the RDH12 community and wider society, we are committed to involve the community throughout our work, including research. Patient priorities drive and shape our research, so that funding gets directed to where it will make the most difference to people’s lives. We encourage the RDH12 community to get engaged through the participation to our in person/ virtual RDH12 community meetings or volunteering as representative in our our RDH12 Patient Board.