Representing our community

Our sight loss survey has highlighted that you have a real appetite to get involved in representing the inherited sight loss community through activities like focus groups, surveys and research projects.

We need to know a bit more about you to help us make this happen. Knowing more about you also helps us to provide better information and support via the services we offer and put you in touch with medical researchers.

We encourage you to complete the questions you are comfortable with on the form. We will always contact you to ask if you’d like to be involved in a specific project and we will never pass your details to a third party without your consent.

Alternatively you can call our friendly team who will take your details over the phone, 01280 821334.

Enhanced Data Capture
To allow us to cross-reference your entry on our database.
To allow us to cross-reference your entry on our database.
To allow us to cross-reference your entry on our database.
So we can let you know about condition specific events, news, research and support.
Many treatments nearing the end of the development pipline are gene specific. We are sometimes approached by biotech or pharma companies seeking to engage with gene specific patient groups. It also gives our community the potential to take part in clinical trials, focus groups and/or interviews.
e.g. 1967. We are sometimes asked for people who fall within a certain age range for surveys etc.
To help us to understand what type of support may be required by you and potentially provide access to support.
To tailor our support and events. Pharma / biotech companies are sometimes looking for specific individuals to take part in research / focus groups / interviews.
Would you be interested in hearing about other opportunities to represent the inherited sight loss community, through activities like focus group participation, more in-depth surveys and involvement in research development?
We will use you details to keep you updated about research, events, information & fundraising Some of the information you are providing is classed as ‘special category data’, which could include sensitive information about your eye condition, genetic diagnosis and health.  We collect this information to enable us to deliver the best possible service, and ensure that you receive opportunities relevant to you.  We require your permission to collect this data, and ask that you tick this box to indicate your consent:  

You can withdraw your consent or update your preferences at any time by contacting us on 01280 821334, email us on info@RetinaUK.org.uk or write to us at PO Box 350, Buckingham, MK18 1GZ.

Your privacy is our priority. We promise to keep your details safe and will never sell them. Need extra reassurance? Our privacy policy explains all.