Start here
1in4000 is a worldwide community for people living with Retinitis Pigmentosa and the people who love them. Our first goal is simple: to see how many of us there are, and where. Here's how to join.
1. Create your account
Sign up with an email and a nickname (never your real name). Choose whether you have RP or you're a relative.
2. Confirm & consent
Verify your email, then read a short, plain-language consent screen and tick the box to appear on the map.
3. Appear on the map
Your city and region become part of a growing worldwide map, so others can see they're not alone.
A weekly newsletter, just for you
When you join, you'll receive a newsletter every two weeks, written by AI, summarising the latest research and technology advances for your gene from the past two weeks, plus invitations to gatherings and meet-ups with other people affected by RP. Family members who sign up receive it too — because you're all in this together.