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Privacy Policy

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Privacy Policy

Last Updated: 04.10.26

The 16p11.2 Genetic Foundation (“Foundation,” “we,” “us,” or “our”) respects your privacy and is committed to protecting personal information. This Privacy Policy explains how we collect, use, disclose, and protect information when you visit our website, participate in our programs, or interact with us (collectively, the “Services”).

This Privacy Policy is incorporated by reference into our Terms and Conditions and should be read together with our Medical Disclaimer.

1. Scope of This Privacy Policy

This Privacy Policy applies to personal information we collect through:

  • Our website and online forms
  • Email or other communications with us
  • Donations, newsletters, and events
  • Educational programs and outreach activities

This Privacy Policy does not apply to third‑party websites or services linked from our site.

For clarity, ‘Services’ include the Foundation’s website, programs, communications, and other resources, as described in the Terms and Medical Disclaimer.

2. Information We Collect

A. Information You Provide Voluntarily

We may collect personal information that you choose to provide, including:

  • Name, email address, mailing address, or phone number
  • Donation or payment information (processed by third‑party providers)
  • Newsletter sign‑ups or event registrations
  • General inquiries or feedback

Important: Please do not submit sensitive medical or genetic information unless explicitly requested as part of an authorized program, research study, or registry with appropriate notice and consent.

B. Automatically Collected Information

When you use our website, we may automatically collect:

  • IP address
  • Browser type and device information
  • Pages visited and time spent on the site
  • Referring URLs

This information is used to help us understand how visitors use our site and to improve our Services.

3. How We Use Information

We use personal information for purposes consistent with our nonprofit mission, including to:

  • Respond to inquiries or requests
  • Provide educational resources or updates
  • Process donations and acknowledgments
  • Communicate about events, programs, or opportunities
  • Improve website functionality and content
  • Comply with legal and regulatory obligations

We do not use personal information to provide medical advice, diagnoses, or treatment and do not use it to create professional relationships, consistent with our Medical Disclaimer.

4. Cookies and Analytics

We may use cookies or similar technologies to enhance user experience and gather usage data. You may control or disable cookies through your browser settings; however, some website features may not function properly as a result.

We may use third‑party analytics tools (such as Google Analytics) to help us understand website traffic and usage patterns.

5. How We Share Information

We do not sell personal information.

We may share information only in the following limited circumstances:

  • With trusted service providers (e.g., payment processors, email platforms) who help us operate our Services and are contractually required to protect your information
  • To comply with legal obligations, court orders, or lawful requests
  • To protect the rights, safety, or property of the Foundation or others

Any information shared is limited to what is reasonably necessary for the stated purpose.

6. Donations and Donor Information

The 16p11.2 Genetic Foundation values the trust of our donors and is committed to protecting donor information.

A. Information Collected for Donations

When you make a donation, we may collect the following information:

  • Name and contact information (such as email or mailing address)
  • Donation amount and date
  • Transaction reference details

Payment information (such as credit card or bank details) is processed directly by third‑party payment processors and is not stored on our servers.

B. Use of Donor Information

We use donor information solely for purposes consistent with our nonprofit mission, including to:

  • Process and acknowledge donations
  • Provide donation receipts and confirmations
  • Maintain records required for accounting, audit, or tax reporting
  • Communicate with donors about the Foundation’s activities, unless you opt out

We do not use donor information to provide medical advice, genetic guidance, or personalized recommendations of any kind, consistent with our Medical Disclaimer.

C. Sharing of Donor Information

The Foundation does not sell, trade, rent, or share donor personal information with third parties for their marketing or fundraising purposes.

Donor information may be shared only:

  • With trusted service providers (such as payment processors or accounting services) who assist us in operating our organization and are contractually required to protect donor data
  • As required by law, regulation, or lawful request by a governmental authority

D. Public Recognition and Anonymity

Donors may be publicly acknowledged in reports, on the website, or at events only if they have agreed to such recognition.

If you wish to remain anonymous or change how your name is displayed, you may contact us at any time using the information below.

E. Tax and Legal Disclosures

Donations to the Foundation may be tax‑deductible to the extent permitted by law. Donors are responsible for consulting their own tax advisors regarding tax treatment of contributions.

The Foundation does not provide legal or tax advice.

F. California Donor Privacy Rights

Consistent with California law and the California Consumer Privacy Act (CCPA/CPRA):

  • Donor personal information is treated as confidential
  • Donors may request access to, correction of, or deletion of their personal information, subject to legal and record‑keeping requirements
  • Donors will not be discriminated against for exercising privacy rights

Requests may be made using the contact information below.

G. Opt‑Out of Donor Communications

You may opt out of non‑transactional donor communications at any time by:

  • Using the unsubscribe link in our emails, or
  • Contacting us directly

Transaction‑related communications (such as receipts) may continue as required by law.

7. Research and Program Participation

If you participate in a research study, registry, survey, or similar program:

  • Collection and use of information will be governed by a separate notice and/or informed consent, if applicable
  • Participation is voluntary
  • Viewing information on our website does not enroll you in any research activity

8. California Privacy Rights (CCPA / CPRA)

If you are a California resident, you may have rights under the California Consumer Privacy Act (CCPA), as amended by the California Privacy Rights Act (CPRA), including the right to:

  • Know what personal information we collect and how we use it
  • Request access to or deletion of personal information (subject to legal exceptions)
  • Correct inaccurate personal information
  • Limit the use of certain sensitive personal information (if applicable)
  • Not be discriminated against for exercising your privacy rights

To exercise these rights, contact us using the information below. We may need to verify your identity before responding.

9. Data Security

We use reasonable administrative, technical, and physical safeguards to protect personal information from unauthorized access, disclosure, alteration, or destruction.
However, no method of data transmission or storage is completely secure, and we cannot guarantee absolute security.

10. Data Retention

We retain personal information only for as long as reasonably necessary to fulfill the purposes described in this Privacy Policy, unless a longer retention period is required or permitted by law.

11 Children’s Privacy

Our website is not directed to children under the age of 13, and we do not knowingly collect personal information from children without appropriate parental consent. If you believe we have inadvertently collected such information, please contact us.

12. Third‑Party Links

Our Services may include links to third‑party websites. We are not responsible for the privacy practices or content of those external sites. We encourage users to review the privacy policies of any third‑party sites they visit.

13. Changes to This Privacy Policy

We may update this Privacy Policy from time to time. Updates will be posted on this page with a revised “Last Updated” date. Continued use of our Services after changes are posted constitutes acceptance of the updated policy.

14. Contact Us

If you have questions about this Privacy Policy or our data practices, please contact us at:
16p11.2 Genetic Foundation
Email: info@16pfoundation.org
Website: https://16pfoundation.org/about-us/contact-us/