Your privacy

Privacy Policy

Last updated: 24 October 2026

We run a community for people living with CRPS, so we know how personal this is. This page explains what we keep, why, who can see it, and how to take control of it.

The short version

We collect only what the site needs to work: your username, email, password and what you choose to post.
We never sell your information, show adverts, or use tracking or analytics tools.
Threads and replies can be read by anyone, including people who are not members, and search engines may show them. Think before you share health details.
You can delete your account at any time from your profile.

1. Who we are

The Orange Ribbon is a non-profit CRPS awareness and support community. In this policy, "we" and "us" mean The Orange Ribbon, the organisation that runs this website, and we are the "controller" of the personal information described here.

To ask us anything about your information, contact us: write to orangeribbonza@gmail.com.

2. What we collect, and why

Information you give us

Your account: your username, your email address, and your password. We never store your password itself, only a one-way scrambled version (a "hash") that cannot be turned back into it. We also note the date you joined and when you agreed to our Terms.
What you post: threads, replies, your short bio, photos and photo descriptions, your profile picture, and your likes, reposts, follows and @mentions.
Your notification choices: which alerts you want, and, if you turn on phone or computer alerts, an address that your browser's push service gives us so we can send you alerts.

Information collected automatically

Your internet address (IP address): we use it for security, to slow down password guessing and spam. Those short-lived counters are cleared after about a day. Our hosting provider also keeps standard server logs.
A sign-in cookie: see "Cookies" below.

Health information. You may choose to talk about your health, diagnosis or treatment. That is sensitive ("special category") information. We never ask for it and you never have to share it. By posting it, you choose to make it public on the site, and you agree to us holding and showing it for that purpose. You can delete a post at any time.

3. Why we may use your information (our legal reasons)

To run your account (so we can keep our agreement with you): signing you in, showing your posts, sending the emails you ask for.
With your consent: for anything you choose to post about your health, and for phone or computer alerts. You can withdraw consent by deleting the post or turning alerts off.
For our legitimate interests in keeping a safe community: stopping spam and abuse, moderating content, and protecting the site.
To meet the law, for example when a court or the police lawfully require it.

4. Who can see what

Anyone on the internet can read threads and replies, your username beside them, and your profile picture. Search engines may list them.
Signed-in members only can see profile pages (your bio, followers and activity) and photos attached to posts.
Moderators can see reports, and can read and hide posts, including ones hidden from everyone else.
Nobody else sees your email address or password. We do not show your email to other members.

Photos are re-saved when you upload them, which removes hidden details such as the place a photo was taken. Please do not post photos that identify you or others unless you are happy for members to see them.

We do not sell or rent your information. We use a small number of trusted companies to run the site. They may only use it to provide their service to us:

Google Cloud, which hosts the website and its database, in Europe.
Our email provider, which delivers the confirmation and password emails we send you. We send no marketing email.
Browser push services run by Google, Apple or Mozilla, only if you turn on alerts. Alerts are encrypted and only say who did something, such as "Sam mentioned you", never what anyone wrote.

We may also share information if the law requires it, or to protect someone's safety or the safety of the site.

6. Cookies

We use one cookie, which keeps you signed in and protects your forms from forgery. It is strictly necessary for the site to work, so we do not need to ask permission for it. We use no advertising, tracking or analytics cookies. To make the site faster and work as an app, your browser may store copies of our images and style files, but never your posts or personal pages.

7. How long we keep it

Your account and posts: for as long as your account exists.
If you delete your account: your username, email, bio, photos, profile picture, follows, likes and alert settings are erased straight away. Your threads and replies stay and show as "Former member", so conversations still make sense. If you want any post gone, delete it before you delete your account, or ask us.
Unconfirmed sign-ups: the link stops working after 24 hours and the details are then cleared out. Password reset links: stop working after 1 hour and are then cleared out.
Backups: our hosting provider keeps backups for a limited period. Deleted information disappears from them as they are replaced.

8. Your rights

You have the right to: see the information we hold about you; have it corrected; have it erased; restrict or object to how we use it; receive a copy you can take elsewhere; and withdraw consent at any time. Most of this you can do yourself: edit your bio and picture, delete posts, switch alerts off, or delete your account, all from your profile.

For anything else, contact us: write to orangeribbonza@gmail.com. We will reply within one month. If you are unhappy with how we handle your information, you have the right to complain to your local data protection authority (in the UK, the Information Commissioner's Office at ico.org.uk). We would appreciate the chance to put things right first.

9. Age

This community is for people aged 18 or over. We do not knowingly collect information from anyone younger. If we learn that someone under 18 has joined, we will remove the account.

10. How we protect it

We use encrypted connections (HTTPS), store passwords only as hashes, limit who can reach the database, block repeated password guessing, and keep photos away from non-members. No website can promise perfect security. If something goes wrong that puts your information at risk, we will tell you and the authorities as the law requires.

11. Changes to this policy

If we change this policy in a way that matters, we will say so on the site. The date at the top shows when it was last updated.

12. Contact

write to orangeribbonza@gmail.com.

See also our Terms of Use and Community Guidelines.