Lived experience

Share your experience

If you have been through gene therapy, stood beside someone who did, or you are a clinician whose patient has, you can share how it was. You choose a nickname or your real name to sit with those words. At the end there is a question about whether you are happy to talk to a patient who is still considering it.

You can say how it was, and choose a nickname or your real name to sit with those words. If you are willing to talk, there is a further question about whether your name and how to reach you may be kept, for that purpose only. Nothing you write here is published, and this is not medical advice.

How this works

Every message is read. The nickname or name you choose is what would appear with your experience if it is shown. If you say you are happy to talk, and that your contact details may be kept, you will hear back first. If a conversation looks right, you will be introduced. If it does not, you will still hear back.

What you tell someone is one person's experience. It is not a substitute for their medical team.

Who are you in this?
About the treatment

The day is enough. The site keeps count of how long it has been, in years, months, and days, from that day, and the numbers move on their own. You do not have to name the hospital if you would rather not.

The day of the infusion, if you know it. Approximate is fine.

Hospital or city, and the country. Optional.

Optional. How old the person was, in years, at the infusion.

A few words is enough. You do not have to share medical details.

How should your name appear with your experience?

This is what would sit next to your words. You can use a nickname, or your real name. Your email and phone are not shown.

A first name, an initial, or a nickname is enough.

What you write stays yours. Nobody has permission to take your words from this site and use them somewhere else. Whose words these are

The nickname or name you choose is what would sit with your words. If you agree below, the condition, where it happened, age at treatment, and how long it has been may also appear after approval. Your email and phone are only kept if you say yes to talking, and tick that they may be, for that purpose only. How these details are used

May we publish your experience?

If you say yes, after approval the site may show your words, the name you chose, the condition, where treatment happened, age at treatment, and how long it has been since that day. Your email and phone stay private. Saying no does not affect your choice to speak to someone.

Looking for someone to talk to, rather than sharing your experience? Ask to speak to a patient