NEW PATIENT? REGISTER NOW
(Online registration is now available for patients, and for parents registering their children as patients. We are not yet able to accept new online registrations from female carriers or for deceased patients, but this feature will be coming soon.)
ALREADY REGISTERED? LOG IN
Need a different language?
The online registry is currently only available in English, and we will be adding other languages as soon as we can. If you need the information in a different language now please contact the Registry Curator, Jo Bullivant, at firstname.lastname@example.org.