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Privacy Policy

Last updated: September 21, 2026

RareKids-CAN is operated by the Maternal, Infant, Child and Youth Research Network (MICYRN), a Canadian not-for-profit organization. We respect your privacy and are committed to handling personal information responsibly and in accordance with applicable Canadian privacy laws.

This Privacy Policy explains how we collect, use, disclose, retain, and protect personal information when you visit the RareKids-CAN website, contact us, subscribe to communications, or otherwise interact with website services that link to this Policy.

1. Information we collect

Information you provide

Depending on how you use the website, you may provide:

  • your name and email address;
  • your organization, role, or professional affiliation;
  • the subject and content of an inquiry or message;
  • newsletter subscription preferences;
  • information provided when requesting a consultation, service, partnership, or research connection; and
  • other information you choose to provide.

Because RareKids-CAN serves the rare disease community, messages may sometimes contain sensitive health or family information. Please do not submit medical records, research participant information, or other sensitive personal information through a general contact form unless it is specifically requested and the collection notice explains why it is needed.

Information collected automatically

When you use the website, our hosting, security, and analytics services may automatically receive technical information such as your IP address, browser type, device type, operating system, referring page, pages viewed, approximate region, and the date and time of your visit. We use optional analytics only in accordance with your cookie choices.

2. How we use information

We may use personal information to:

  • respond to inquiries and provide requested information;
  • assess and coordinate requests for RareKids-CAN services, consultations, partnerships, or research connections;
  • send newsletters and updates when you have asked to receive them;
  • operate, secure, maintain, troubleshoot, and improve the website;
  • understand website use and the needs of our audiences;
  • prevent spam, fraud, abuse, and security incidents;
  • maintain appropriate records; and
  • meet legal, regulatory, funding, governance, and reporting obligations.

3. Consent and other lawful authority

We collect, use, and disclose personal information with consent or as otherwise permitted or required by law. Consent may be express, such as when you subscribe to a newsletter or submit a form, or implied where appropriate based on the nature of your interaction. You may withdraw consent, subject to legal or contractual restrictions and reasonable notice. Withdrawing consent may affect our ability to provide a requested service.

4. Communications and anti-spam

We send newsletters and other electronic updates in accordance with applicable anti-spam laws. You may unsubscribe at any time by using the unsubscribe mechanism in the message or by contacting us. We may still send administrative or service-related messages where permitted by law.

5. Cookies and similar technologies

We use necessary cookies to operate and secure the website. With your permission, we may also use optional cookies or similar technologies for analytics and selected functionality. You can accept, reject, or change optional cookie choices using the Cookie Preferences control on the website. See our Cookie Policy for details.

6. When we share information

We do not sell personal information. We may share information only as reasonably necessary with:

  • MICYRN personnel and authorized RareKids-CAN team members who need it for the purposes described above;
  • service providers supporting website hosting, security, forms, email delivery, analytics, translation, mapping, and technical maintenance;
  • RareKids-CAN partners or affiliated institutions when you request a connection or service and the disclosure is appropriate for that request;
  • professional advisors, auditors, insurers, funders, or regulators where appropriate and subject to applicable safeguards; and
  • law enforcement, courts, or other parties when required by law or reasonably necessary to protect rights, safety, and security.

Service providers are expected to use personal information only to provide services to us and to protect it appropriately.

7. Third-party websites and external forms

The website links to external resources and may direct you to forms or services operated by universities, research institutions, REDCap administrators, social media platforms, event providers, map providers, and other organizations. Information you submit directly to an external service is governed by that organization’s privacy notice and terms, not solely by this Policy. Please review the applicable notice before providing personal or sensitive information.

8. Processing and storage outside your province or Canada

Some service providers may process or store information in another province or country. As a result, information may be subject to the laws of the jurisdiction where it is processed and may be accessible to courts, law enforcement, or national security authorities in that jurisdiction. We use reasonable contractual and organizational measures appropriate to the sensitivity of the information and the service involved.

9. Retention

We retain personal information only for as long as reasonably necessary for the purpose for which it was collected, to maintain appropriate business and research administration records, and to meet legal, contractual, funding, or regulatory requirements. When information is no longer required, we securely delete, destroy, or anonymize it, subject to applicable retention obligations and backup cycles.

10. Security

We use reasonable administrative, technical, and physical safeguards appropriate to the sensitivity of the information. These may include access controls, secure hosting, encryption in transit, spam and abuse controls, monitoring, and limiting access to authorized personnel. No internet transmission or storage system can be guaranteed to be completely secure.

11. Children and youth

This public information website is intended for a broad audience, including patients and families, but its general forms are not intended to collect personal information directly from children without appropriate parent or guardian involvement. If you are under the age at which you can provide valid consent in your jurisdiction, please ask a parent or guardian to contact us on your behalf. If you believe a child has submitted personal information inappropriately, contact us so we can review and address the situation.

12. Your privacy rights

Subject to applicable law, you may ask to access or correct personal information we hold about you, withdraw consent, ask questions about our practices, or make a privacy complaint. We may need to verify your identity before fulfilling a request. Some information may be exempt from access or deletion where the law permits or requires us to retain it.

If you are not satisfied with our response, you may have the right to contact the Office of the Privacy Commissioner of Canada or the privacy regulator in your province or territory.

13. Changes to this Policy

We may update this Policy to reflect changes to the website, our practices, or legal requirements. We will post the updated version on this page and revise the date above. Where appropriate, we will provide additional notice of material changes.

14. Contact us

Questions, requests, or complaints about privacy may be directed to:

Privacy Officer
MICYRN / RareKids-CAN
V2-230, 950 West 28th Avenue
Vancouver, BC V5Z 4H4
Email: rarekidscan@micyrn.ca
Website: Contact Us