Registering yourself

Entering patient details into the Registry is initiated by the doctor, usually the specialist who looks after the patient for the rare condition. If you would like your details to be entered in the Registry then please provide details of the 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. For further information, you can also contact us on

Last Revised: 21st July 2023