A group of people seated around a table. A man in the foreground is wearing a Retina UK tshirt with his back to the camera

Join our Lived Experience Panel

Our sight loss survey 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 via the Retina UK Lived Experience Panel.

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.

Name(Required)

Prefix First Last

Address(Required)

Address, including postcode Address Line 2 Town/City County Postcode

To allow us to cross-reference your entry on our database.

Email address(Required)

To allow us to cross-reference your entry on our database.

Your diagnosed condition(Required)

So we can let you know about condition specific events, news, research and support.

Please specify your condition (if you selected 'Other')

Your genetic diagnosis (if known)

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.

Your year of birth(Required)

e.g. 1967. We are sometimes asked for people who fall within a certain age range for surveys etc.

Your visual impairment category(Required)

To help us to understand what type of support may be required by you and potentially provide access to support.

Are you the parent of someone living with a condition or are you living with a condition yourself (or both)(Required)

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?(Required)

Yes

If you already hear from us we will continue to contact you in the same way. If you don’t already hear from us, we’d like to send you information in the post and/or over the telephone about events, research, fundraising, appeals and our regular newsletters & updates.

If you would prefer not to receive information in the post please tick here

If you would prefer not to receive information over the telephone please tick here

It’s often cheaper for us to contact you via email or SMS (text message) – please tick the boxes below if you’re happy for us to contact you in this way:

Text

Your privacy is our priority. We promise to keep your details safe and will never sell them. Just for your information we use an email broadcast company based in the USA. Would you like to know more? our privacy policy explains all: RetinaUK.org.uk/privacy-policy.

If you would like to change the way you hear from us, how we use your information or do not want to receive and further communications from us, just email info@RetinaUK.org.uk, call 01280 821334 or write to us at Retina UK, Whiteleaf Business Centre, 11 Little Balmer, Buckingham MK18 1TF.

This field is for validation purposes and should be left unchanged.

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.