If you previously registered, but your information has changed, please complete the registry again, so we have the most current information.

Newly Diagnosed Families – Please complete the Newly Diagnosed form.

The purpose of this registry is to make sure we have the most current contact and demographic data for individuals with Angelman syndrome and their families in order to:

  • Immediately notify potential participants for Angelman research trials.
  • To alert you of recent events and research findings.
  • Let you specify the way you would like to be contacted.

All information is strictly confidential. It will not be sold or provided to any other sources and will be used only for the purposes stated above. Contact us with any questions by email at info@angelman.org or by telephone at 800-432-6435.