Registering yourself as a patient in the Core Registry

Entering patient details into the Core Registry is initiated by the doctor, usually the specialist who looks after the patient for the rare condition. If you are a patient and would like your own details to be entered in the Core Registry then please provide details of the Core Registry to your doctor. Alternatively, you can complete details of yourself and your doctor in the form below and we can contact the doctor on your behalf and help them with the process of registering you. The information you provide will not be used for any purpose other than contacting your doctor. You can also contact us on