Privacy Policy

Last Updated: October 23, 2025

1. Introduction

Welcome to the CAN-ACT Registry | Registre CAN-ACT (the "Registry"), accessible at can-act.org (the "Site"). This Site is operated by the Loeys-Dietz Syndrome Foundation Canada. We are committed to protecting the privacy and security of our users' personal information.

This Privacy Policy explains how we collect, use, disclose, and safeguard your information when you visit our Site, register for our services, or use our contact forms. Please read this policy carefully.

2. Information We Collect

We collect information in two main ways: information you provide to us directly and information we collect automatically.

A. Information You Provide to Us

We collect personal information that you voluntarily provide to us when you:

  • Fill out a registration form;
  • Use a contact form to make an inquiry; or
  • Upload documents to the Site.

The types of personal information we collect may include:

  • Contact Information: Name, email address, and phone number.
  • Professional Information: Credentials and institutional information.
  • User Content: Documents and any other files you choose to upload to the Site.

B. Information We Collect Automatically

When you access and browse the Site, we may automatically collect certain information about your device and browsing activity, including:

  • Log and Usage Data: IP address, browser type, device type, operating system, pages visited, time spent on the Site, and referring URLs.

We use the following technologies to collect this information:

  • Cookies: Small data files stored on your device that help us improve our Site and your experience.
  • Analytics: We use third-party analytics services, such as Google Analytics, to help us understand and analyze website traffic.
  • Web Beacons & Pixels: Electronic files used to record information about how you browse the Site.
  • Server Logs: Files that automatically record activity on the Site.

3. How We Use Your Information

We use the information we collect for the following purposes:

  • To Operate the Registry: To manage your account, provide our services, and facilitate the functions of the CAN-ACT Registry.
  • To Respond to Inquiries: To answer your questions and comments submitted through our contact forms.
  • To Improve Our Site: To analyze website traffic, monitor usage trends, and improve the user experience and functionality of our Site.
  • To Comply with Legal Obligations: To meet our legal and regulatory requirements.

4. How We Share and Disclose Your Information

We do not sell or rent your personal information to third-party advertisers or marketing partners. We may share your information in the following limited circumstances:

  • With Third-Party Service Providers: We share information with third-party vendors and service providers who perform services on our behalf. These may include:
    • Website Hosting Providers
    • Cloud Storage Providers (for storing uploaded documents)
    • Analytics Providers (e.g., Google Analytics)
    • Email Service Providers (for communications)
    • Customer Support Tools
    • Payment Processors: When you make a donation, you are directed to a third-party payment processor. We do not store or collect your payment card details. That information is provided directly to our third-party processor, whose use of your personal information is governed by their own privacy policy.
  • For Legal Reasons: We may disclose your information if we are required to do so by law or in response to a valid legal request, such as a court order, subpoena, or government investigation.
  • In a Business Transfer: In the event of a merger, acquisition, sale of assets, or other change of control, user data will be preserved and transferred to the new controlling agency as part of the registry's assets.

5. Data Security and Retention

A. Security

We use administrative, technical, and physical security measures to help protect your personal information. This includes SSL/TLS encryption for data in transit, secure servers, and internal access controls to limit who can access your information.

While we have taken reasonable steps to secure the personal information you provide, please be aware that no security system is impenetrable, and we cannot guarantee the security of our systems 100%.

B. Retention

We will retain your personal information indefinitely, as long as the CAN-ACT Registry program is active, to fulfill the purposes for which it was collected and to maintain the integrity of the registry.

6. Your Privacy Rights

Under Canadian privacy law (PIPEDA), you have certain rights regarding your personal information.

  • Access: You have the right to request access to the personal information we hold about you.
  • Correction (Rectification): You have the right to request that we correct any inaccurate or incomplete personal information we hold about you.
  • Deletion: You may request the deletion of your personal information. Such requests will be handled on a case-by-case basis.
  • Opt-Out of Communications: You may opt out of receiving any marketing or newsletter communications from us at any time by:
    1. Clicking the "unsubscribe" link in the footer of the email; or
    2. Sending your request to info@loeysdietzcanada.org.

To exercise your rights of access, correction, or deletion, please submit a written request to our Privacy Officer using the contact information in Section 9.

7. Cookies and Tracking Controls

You can control and manage cookies through your web browser settings. Most browsers allow you to block or delete cookies. Please note that if you set your browser to block cookies, some features of our Site may not operate correctly.

8. Children's Privacy

Our Site is not intended for or directed at children under the age of 13. We do not knowingly collect personal information from children under 13. If we become aware that we have inadvertently collected such information, we will take steps to delete it.

9. Changes to This Privacy Policy

We may update this Privacy Policy from time to time. We will notify you of any changes by updating the "Last Updated" date at the top of this policy. We encourage you to review this policy periodically to stay informed about how we are protecting your information.

10. Contact Us

If you have any questions, concerns, or requests regarding this Privacy Policy or our privacy practices, please contact our Privacy Officer:

Email: info@loeysdietzcanada.org

Mail:
Loeys-Dietz Syndrome Foundation Canada
Privacy Officer
835 Avenue Selkirk
Pointe-Claire QC H9R 3S2