Thank you for your interest in the study. This registration process should take only a few minutes of your time.
  It is important that all sections of this registration are completed if you are considering taking part.
If, for whatever reason, you are unable to complete your registration within 24 hours of starting it we will unfortunately need to remove the details you have entered in order to maintain the confidentiality of your data. It will however be possible to re-register, should you wish to.
Sign Up

I have a rare disease

I have been diagnosed with a rare disease

I am a family member

I am an unaffected blood relative or partner of someone with a rare disease.

I am registering on behalf of a participant

I am a Parent / Guardian / Carer of a participant and I will use the site on their behalf.

Participant details:
Nominated contact details:
Please be aware: If you are signing up on behalf of someone but also want your own account, you will need to sign up with a different email address.