ASF Contact Registry
Thank you for your interest and continuing support of Angelman Syndrome Foundation. The purpose of this registry is multi-dimensional. We want 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. We want to make sure we match our communications with you about research study information and your individual with AS.
- To alert you to the most current information available regarding Angelman syndrome, events and research findings.
- To contact you quickly and directly in the way you want us to contact you.
If you have previously registered your individual with Angelman syndrome and your family with the Angelman Syndrome Foundation, we ask you to kindly take a few minutes to again provide this information so that we have the most current and up-to-date information.
If you have not previously registered your individual with Angelman syndrome or your family with the Angelman Syndrome Foundation, we invite you to do so now and welcome ALL Angelman families' participation. We look forward to serving you, your family and all individuals with Angelman syndrome.
All information is strictly confidential. It will be held on a secure, password protected server, with limited access. It will not be sold or provided to any other sources and will be used only for the purposes stated above. Should you have any questions regarding this, please do not hesitate to contact the Angelman Syndrome Foundation by email at firstname.lastname@example.org or by telephone at 800-432-6435.