How do I register?
Registration is done online (over the internet), which allows you to view and update your data at any time.
All that you will need is your e-mail address to hand. This will then become part of the information required to login once you have registered.
You do not need to complete all of the information in one go as you can save along the way and come back to your account at any time.
Registration is voluntary and is done by you (or by the parent/guardian if the patient is under 18 years of age).
You are asked a number of questions about yourself and how the condition affects you (see the "What information is collected?" section for more information).
You will also be asked to give your consent for your doctor to enter more specific clinical or genetic information about your condition.
You can view your data at any time, including the information added by your doctor.