Privacy Policy

Last updated: January 13, 2026.

Chromosome 18 Registry & Research Society is a 501(c)(3) nonprofit organization committed to protecting your privacy.

This Privacy Policy explains how we collect, use, and protect personal information when you visit chromosome18.org or interact with our programs, events, registry, and communications.

Information We Collect

We may collect personal information that you voluntarily provide, such as your name, email address, mailing address, phone number, and information submitted through contact forms, event registrations, donations, or registry participation.

We may also collect limited technical information automatically, including IP address, browser type, pages visited, and general usage data to help improve website performance and security.

How We Use Information

We use information to operate and improve our website, respond to inquiries, manage events and donations, communicate with our community, and meet legal and regulatory obligations.

We do not sell personal information.

Analytics and Google Ads

We may use website analytics tools to understand overall site usage and improve content.

Chromosome 18 may use Google Ads, including Google Ad Grants, for nonprofit awareness and educational outreach. Ads are informational in nature and are not used for commercial purposes or sensitive health-based targeting.

Cookies

Cookies help improve website functionality. You may disable cookies through your browser settings, though some features may not function properly.

Registry and Research Participation

Participation in the Chromosome 18 Registry is voluntary. Information is used for research, educational, and organizational purposes as described at the time of participation. Participation does not guarantee medical benefit, diagnosis, or treatment.

Children’s Privacy

We do not knowingly collect personal information from children under the age of 13 without parental or guardian consent.

Your Rights

You may request access to, correction of, or deletion of your personal data by contacting data@chromosome18.org.

Contact

Questions about this Privacy Policy may be sent to data@chromosome18.org.