This website has been created as part of research with NHS ethical approval. It aims to help people understand more about the genetic diagnosis in their family.
For many genetic conditions, a family can have several people at risk of the same disease. Passing on that news is important but can sometimes feel difficult if you don’t see your relatives very often, or you don’t know how they are going to react to the news. We wanted to help make sharing information about the diagnosis easier by providing some advice and a free way to share information electronically.
Clear and correct information is given to help patients and their relatives make the choices that are right for them, such as:
As a health professional, if you would like to set up or engage with an account for a patient, click here to sign up now >
As someone with a diagnosis, you can set up an account and share documents with your relatives. You will also be able to give your Health Professionals access to add more documents that are relevant to you. Click here to sign up now >
You will be contacted directly by your relative. You should receive an email with a link to log in. If it does not arrive, please check your spam filter. You may also like to read some of the information resources on this website.
We have compiled a range of freely available documents and resources which we hope will be of use to you. Click here to view all resources >