The first ever Patient Information Day for families affected by RDH12 LCA was held in London in 2018 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. We have now expanded our global community to ~ 100 families from all over the world. We organize regular community connects and have recently created a new community website.
Our global patient group keeps growing and growing. It is now running Biyearly virtual connects.
We are working closely with other international charities active in the RDH12 space (RDH12 Fund for Sight in the US and Candle in the Dark in Belgium) as well as other charities operating in the Inherited Retinal Dystrophies space.
Our flagship Eyes On The Future events are an opportunity to raise awareness on LCA RDH12 and raise indispensable research funds.
In 2018, the first Eyes On the Future Gala - London raised over £200,000. Over 200 guests were participating to this memorable night. It was also endorsed by HRH Sophie Countess of Wessex.
In 2021, the second Eyes On the Future Gala - Milan took place virtually due to the pandemic. With over 700 participants we raised over 180,000 €. This virtual gala was supported by ambassadors such as Olympic Champions, TV and Sport Personalities.