This site is currently inactive for 24 hours while we move the data to a new platform.

Thank you for visiting Your participation is highly valued, and we hope it will continue.

If you are a Registry member, all information you entered will be moved to the new platform. No need to re-enter any information that you have already provided. You can change your contact preferences or opt out at any time.

As of tomorrow, your email address will be your new username. We ask that you log in to the new registry with the email address you provided when you first registered. If your email has changed or you aren’t sure which email address you registered with, let us know by contacting Your password is the same, and can be retrieved if you do not remember it.

Children’s Tumor Foundation is truly grateful to Invitae for maintaining the Registry over the last 8 years. Their expertise made it possible to build the largest database of its kind, to connect participants with studies that match their reported symptoms, and to inform researchers about the needs and preferences of this tough, determined community.

These advances will continue with new platform provider, OpenApp ( We hope you like the new format!

Questions? Write to us at