How your details are used

This page is for the contact details sent with a request to speak to a patient, or with a shared experience. It is written in ordinary language on purpose.

What is collected: If you ask to speak to someone, your name, email, and (if you give it) a phone number are collected, plus whether you would prefer a male or female patient. If you share your experience, the nickname or real name you choose to sit with those words is collected, along with how it was, and the date of the treatment, where it happened, which condition, and age at the time may also be collected. If you also say you are happy to talk, your contact name, email, and (if you give it) a phone number are collected. Those contact details are only kept if you tick that they may be, for introducing you to a patient who is considering gene therapy. The language used on the site is recorded, and a one-way hash of the connection so spam can be stopped. The raw IP address is never stored. The year, month and day counts are calculated when a page is read. Those numbers are not stored. If you say you are not happy to talk, your contact details are not stored. Your experience and the name you chose still are.
Why it is collected: So that an experience can sit with the name you chose, and so that you can be contacted and, if it is right for both of you, introduced to a person who has been through gene therapy, or so that an offer to speak can be taken up. Contact details are not kept for any other purpose.
Who sees it: The person who runs this site. If you agree to publication, the nickname or name you chose, the condition, where treatment happened, age at treatment, and how long it has been may appear with your experience. Your contact name and how to reach you may be shared with one patient, if you both agree to a conversation. This information is not sold. It is not used for advertising.
What may be published: A request to speak, or sharing your experience, is not a story on the site automatically. If you agree on the share form, and the experience is approved, the site may show your words, the name you chose, the condition, where it happened, age at treatment, and how long it has been. Your email and phone are not shown.
Whose words these are: Anything a patient writes about their experience belongs to that patient. Their words stay their words. This site may show an account here only with that person's permission, and only on this site. No reader, company, researcher, or other website has permission to copy what a patient has said and use it somewhere else. You may share a link to a page on this site. You may not copy the account, paste it elsewhere, quote it on another website, or reuse it in any other way unless the patient themselves gives you permission. The same is true for anyone else who shares an experience here: a parent, a partner, a sibling, a friend, or a clinician. What they write belongs to them.
How long it is kept: Until the request is closed, then the contact details are deleted. The experience and the name you chose are kept until then too. A short, non-identifying record is kept in the audit log that a request happened.
If you change your mind: Send another message using the form you used last time, and ask for your details to be deleted. They will be.
Marketing: These forms will not add you to a mailing list.
This is not medical advice: Anything you tell a patient, or that a patient tells you, is one person's experience. For your own care, speak to your clinical team.