How do I register?

Registration is completed online by patients or parents/legal guardian and is completely voluntary. Once registered, you can view and update your information at any time. 

Adults (18+) 

1. Create an account using your email address. 

2. Answer a few questions about yourself and your condition (see What information is collected?)  

3. Save your progress and return at any time to complete your registration. 

4. You may choose to give permission for your doctor to add clinical or genetic information to your record. 

Children and Young People (Under 18) 

1. A parent or legal guardian creates an account using their email address. 

2. They add the child as a patient and complete the registration on their behalf (see What information is collected?) 

3. Save your progress and return at any time to complete your registration. 

4. You may choose to give permission for your child's doctor to add clinical or genetic information to their record. 

5. When the young person reaches age 16 (UK) or 18 (other countries), they can provide their own consent and take over the account. 

You do not need to complete all the information in one go as you can save along the way and come back to your account at any time. 

You can view all information in your account, including details added by your doctor. 

See more details on our Registration Process page.