Privacy Statement (US)

PCDH19 Alliance
Last updated: [6.27.2025]

Information Security

We at PCDH19 Alliance have implemented a variety of security measures to protect your personal information from accidental loss and from unauthorized access, use, alteration, and disclosure.
However, no method of transmitting data over the internet is 100% secure. While we do our best to protect your information, we cannot guarantee its security. Transmission of personal data is done at your own risk. We are not responsible for the circumvention of any privacy settings or security measures contained on our website.
This Privacy Statement applies to U.S. citizens and legal permanent residents.

Scope and Consent

In this privacy statement, we explain how we handle personal data collected via https://pcdh19info.org (the “Website”). By using our Website, you agree to this Privacy Policy.

We commit to:

  • Clearly stating the purpose of personal data collection;
  • Minimizing data collection to only what is necessary for legitimate purposes;
  • Requesting your explicit consent when legally required;
  • Enforcing strong security standards with any third parties that process data on our behalf;
  • Respecting your rights to access, correct, or delete your personal information.

1. Sharing with Other Parties

We only share your data in specific, limited circumstances:

Purpose: To process donations, event registrations, or merchandise sales.

Service Providers Location: United States

2. Legal Disclosures

We may disclose your information if:

  • Required by law, legal process, or court order;
  • Needed to respond to lawful law enforcement requests;
  • In connection with an organizational change (e.g., merger, acquisition).

3. Do Not Track & Global Privacy Control

Our website honors “Do Not Track” signals. If your browser sends a DNT signal, we do not track your browsing behavior.

4. Cookies

Our website uses cookies to enhance your experience. For more details, please refer to our Cookie Policy.

We do not allow Google to use data collected via our website for other services, and full IP addresses are anonymized.

5. Security Measures

We are committed to maintaining data security and preventing unauthorized access. Our measures include:

  • Secure login protocols
  • Encrypted communication (SSL)
  • Access controls and data audits

6. Third-Party Links

This policy does not apply to third-party websites linked from our site. We recommend reviewing their privacy policies before submitting any data.

7. Changes to This Policy

We reserve the right to amend this policy at any time. Updated versions will be posted on our website. If significant changes are made, we will notify users via email or website notices where appropriate.

8. Your Rights

You may:

  • Request access to your data;
  • Request correction or deletion of inaccurate or outdated data;
  • Object to data processing under certain circumstances;
  • Request a portable copy of your data (up to twice per year);
  • File a complaint with your state’s data protection authority if dissatisfied with our response.

To make any of these requests, contact us using the details below. Verification will be required.

8.2 State-Specific Rights

This section supplements the general policy and applies to residents of:

California (CPRA)

You have the right to know:

  • What personal data we collect, why, and from whom;
  • Whether we sell or share your data (we do not);
  • To request deletion of your data (with certain exceptions);
  • To opt out of sale/sharing of your data;
  • To non-discriminatory service if you exercise your rights.

Colorado, Connecticut, Utah, Virginia, Nevada

You have rights to:

  • Data portability;
  • Know if and when your data is used for:
    • Targeted advertising;
    • Sale to third parties;
    • Profiling;
  • Opt-out of such uses via our Opt-out Preferences.

9. Children’s Privacy

We do not knowingly collect data from children under the age of consent in their jurisdiction.

Please do not submit data if you are underage.

10. Contact Details

PCDH19 Alliance

Website: https://pcdh19info.org

Email: julie@pcdh19info.org

11. Data Requests

For access, deletion, or data export requests, please use our Data Request Form or email us directly.

Third-Party Services

We use:

  • Stripe, PayPal, or Square to process payments;
  • Fundraise, or other CRM tools to manage donations;
  • QuickBooks or similar software for accounting purposes.

No personal data is sold or used beyond these services unless legally required.