Who we are

We are a community who care for people affected by Inherited Retinal Dystrophies (IRDs), specifically those affected by RDH12 IRD. We are RDH12 patients, carers, families and friends, united in our drive to find a treatment. 

What we do

We are the catalyst of focused efforts to find a cure for the condition. We deliver tangible progress towards its resolution. We bring together patients, scientists, industries and stakeholders. We accelerate research.  

Why we exist

We want to help people to see for longer. Currently there is a gap between science – which has made a lot of progress into treating similar conditions – and what is available for our condition. We exist to fill this gap and to create awareness that it can be filled.

Our Beliefs

We believe we can help people see for longer by raising awareness, seeding science, pushing research and removing barriers.

We believe that with the right network and collaboration across patients, industry and academia, therapies can be made accessible to patients affected by RDH12 IRD and by other inherited eye diseases.

We believe that what others might see as impossible, can be achieved.

We believe that while each network of efforts is unique, ours, in its intent and strategy, can offer a viable model for innovation for finding a solution for other rare diseases, as the challenges we face are often the same.

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