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Wait! Have you already joined this registry? If you are not sure, please contact us to check before you create a new registration. If you have joined already, please log in here (you can reset your password if necessary).

You can also add an affected family member to your existing registration by logging in. If you still want to create a new registration, please complete this form and click on the “Continue” button to start.

Personal data

Please enter your own details here, even if you are not the patient yourself. If you are registering a child as a patient, you will be able to enter his or her details in a later step. Please note that you must be the patient’s parent or guardian to enter a patient other than yourself.

as year-month-day, e.g. 1967-03-19

User account

With your e-mail address and the password you choose here, you can log in at any time to view or edit your data. In order to protect your personal data against unauthorised access, please choose a password which is hard to guess and write it down in a safe place. Note that the password is case-sensitive. Your password must be at least 6 characters long.