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 contact us at email@example.com and we will help you find the best way you can contribute to the Core Registry.
This page is currently under construction!