Privacy Policy

Cure HHT Canada
Effective Date: July 1, 2025

  1. Introduction

At Cure HHT Canada, we are committed to protecting the privacy of our community, including individuals living with this rare disease, their families, healthcare professionals, donors, volunteers, and website visitors. This Privacy Policy outlines how we collect, use, disclose, and protect personal information in accordance with Canada’s Personal Information Protection and Electronic Documents Act (PIPEDA) and other applicable privacy laws.

  1. About Us

Cure HHT Canada is a non-profit organization based in Vancouver BC, Canada dedicated to improving the lives of individuals affected by Hereditary Hemorrhagic Telangiectasia through education, support, advocacy, and research initiatives.

  1. Information We Collect

We may collect and maintain the following types of personal information:

  • Contact details: name, email address, mailing address, phone number
  • Health-related information: diagnosis, symptoms, treatment history (with consent)
  • Demographics: age, gender, location (optional and anonymized when possible)
  • Donation information: transaction records, payment method (handled by secure third-party services)
  • Volunteer/member data: interests, availability, roles
  • Online interactions: IP addresses, cookies, browser type, and pages visited
  1. Purpose of Collection

We collect personal information to:

  • Communicate with individuals and respond to inquiries
  • Provide educational resources and support programs
  • Manage donations and issue charitable tax receipts
  • Organize events, campaigns, and volunteer activities
  • Conduct and support research and advocacy efforts
  • Improve our website and community outreach
  • Comply with legal or regulatory requirements
  1. Consent

We obtain meaningful consent before collecting, using, or disclosing personal information, except where permitted or required by law. Consent may be given in writing, electronically, verbally, or implied through interaction with Cure’s programs or website.

You can withdraw your consent at any time by contacting us (see Section 13).

  1. Disclosure of Information

We do not sell or rent personal information. We may disclose information to:

  • Authorized service providers who help us operate (e.g., IT support, payment processors)
  • Research or advocacy partners, only with explicit consent and under strict confidentiality agreements
  • Legal or regulatory authorities, as required by law

All third parties are expected to protect personal information in compliance with applicable privacy laws.

  1. Safeguards and Security

We take reasonable steps to protect personal information through administrative, technical, and physical safeguards, such as:

  • Secure servers and data encryption
  • Access controls and limited data access
  • Staff and volunteer training on privacy practices
  1. Access and Correction

You have the right to request access to your personal information and to request corrections if it is inaccurate or incomplete. To do so, please contact us at the information below. We will respond within 30 days as required by law.

  1. Data Retention

We retain personal information only as long as necessary for the purposes for which it was collected, or as required by law. When no longer needed, data is securely destroyed or anonymized.

  1. Website Use and Cookies

Our website uses cookies to enhance user experience and collect analytics data. You can disable cookies through your browser settings, though this may affect functionality.

Our website may contain links to third-party websites. Cure is not responsible for the content or privacy practices of those sites.

  1. Children’s Privacy

Cure does not knowingly collect personal information from individuals under the age of 13 without verified parental or guardian consent.

  1. Updates to This Policy

We may update this Privacy Policy periodically. Any changes will be posted on our website with a revised “Effective Date.” We encourage you to review the policy from time to time.

  1. Contact Us

If you have any questions about this Privacy Policy or wish to access, correct, or remove your personal information, please contact us:

Privacy Officer
Cure HHT Canada
PO Box 77071, 1238 Kingsway Vancouver, BC V5V 3E0
info@curehhtcanada.com