Who we are
We’re Facial Palsy UK. We help people who have facial palsy, and we’ve been doing this since 2012. We also help teachers, doctors and other people understand what having facial palsy is like.
How to get in touch
If you want to know what information we have about you, or you have a question, you can contact us.
- If you’re 13 or over, you can email our privacy officer at data@facialpalsy.org.uk or call us on 0300 030 9333.
- If you’re 12 or under, please ask your parent or carer to contact us for you.
Even if you’re old enough to contact us yourself, it’s a good idea to talk to your parent or carer first, and to copy them into any emails.
What do we mean by “personal information”?
Personal information is anything that could show who you are. That could be your name, address, phone number, email, or a photo or video of you. If you or your family have talked to us before about facial palsy, we might also have some private details about what’s happened and how you’re doing.
Where we get your information from
Mostly, we get it from you or your family — we never buy lists of names. For example:
- Your parent or carer might sign you up for a family day.
- You or your family might contact us to ask for help.
- Sometimes we might talk to your doctor or school about you — but only if you or your parent/carer say it’s okay first.
Stories and photos on our website
Sometimes we share stories and photos of children on our website. Your parent or carer might have shared your story when you were younger, or you might have asked to share it yourself. If you’re under 18, we won’t put your real name next to your photo — you can pick a different name to use instead.
If you ever change your mind, just tell us and we’ll take your story or photo down. You can do this by emailing data@facialpalsy.org.uk or filling in our withdraw consent form. If those feel tricky, just let us know how we can help you instead.
If you’ve been in the news
Sometimes children and their families choose to use their real name in a newspaper or on TV. If that happens, we might share that story too, since you’ve already chosen to make it public.
Helping us raise money
You might want to help us raise money, or ask us for support yourself. Either way, here’s how it works:
- If you’re 12 or under, we always ask your parent, carer, or another responsible adult to give us your information — not you directly. We explain how we keep that information safe in our full Privacy Policy (it’s longer than this one!). They can ask to see that information at any time.
- If you’re 13 or over, you can agree yourself to us keeping some information about you, depending on what we’re doing together — for example, if you want us to email you about fundraising events.
Either way, we’re careful with your information. We won’t share it without permission — unless we’re genuinely worried about your safety — and we always keep it stored securely.
How long we keep it
We usually delete your information after 6 years if we haven’t heard from you. If your story is on our website, it stays up for longer — until you tell us you want it removed.
Your rights
You have the same rights over your information as adults do — for example, the right to see what we hold about you, the right to ask us to correct it, and the right to ask us to delete it. If you’d like the full list explained simply, just ask us, or a parent/carer can look at our main Privacy Policy for more detail: facialpalsy.org.uk/policies/privacy/
If you’re not happy
Tell us, or ask your parent or carer to get in touch — we want to put things right. You (or they) can also contact the Information Commissioner’s Office (ICO), who help sort out problems about personal information, at ico.org.uk.
This Children’s Privacy Notice was last updated on 22 July 2026.