About
I put this together because it's something I wish I had when I went through gene therapy.
I needed something that explained the path in ordinary language. Not a lecture. Not a pile of PDFs. Someone to share their short-term and long-term experience, and a clear walk through what actually happens, for me and the people around me.
So that's what this is. A guide I would have wanted on the nights I couldn't sleep, written so a patient, a parent, a partner, a sibling, a friend, or a clinician can find their place in it too.
This page is why the site exists. It is one person's reason, not medical advice.
Principles
- Clarity
- Complex science in language anyone can understand.
- Accuracy
- Current evidence and recognised clinical practice, drawn from published sources and cited on every page.
- Accessibility
- Usable regardless of age, background, or medical knowledge.
- Support
- This journey affects families, friends and whole networks, not only the patient.
This site is completely non-profit. There is nothing to buy, and no company is behind it.
Talking to a person
Asking for support, and sharing what you have been through, are two different things. Choose the one that fits.
Would you like to speak to someone who has been through it?
A page can only go so far. If you would rather talk to a person, you can ask. You will be contacted first. Nothing is published.
Share your experience
If you have been through 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 to someone who is still deciding, there is a question about whether your contact details may be kept. Nothing is published.
Reviewers
Every clinical page on this site carries the name and credentials of the clinician who reviewed it. Reviewers are not named here yet because the platform is still in development and no clinical page has been published.