Privacy Policy

Cavernous Malformation Canada is committed to safeguarding the personal information that you have entrusted to us. We manage your personal information in accordance with the Personal Information Protection and Electronic Documents Act (PIPEDA) and other applicable laws. 

This policy applies to Cavernous Malformation Canada’s website (cavernousmalformation.ca), programs and services, and all interactions by us and anyone sanctioned to provide services on our behalf. 

What is personal and health information?
Personal and health information are data about an “identifiable individual.” It is information that on its own or combined with other pieces of data can identify you as an individual; this may include, but is not limited to:

• Contact information such as a name, home address, phone number and email address.
• Identification information such as age, sex, marital or family status, ethnic origin.
• Personal information that was not requested but voluntarily given to us.
• Health diagnosis and symptoms.
• Donation information and related financial information.

Privacy Principles
Our privacy policy is based upon the values set by the Canadian Standards Association’s Model Code for the Protection of Personal Information.

1. Accountability
Cavernous Malformation Canada is responsible for personal and health information under its control and has designated individuals who ensure the compliance of this policy.

2. Identifying Purposes

2.1  We will specify the purpose for collecting your personal and health information at the time of collection. If we intend to use it for a new purpose, we will notify you and obtain your consent before proceeding.

2.2  We may collect personal and health information from you in person, over the telephone, by mail, or through online services. Cavernous Malformation Canada uses personal and health information about you and your use of our website, for various purposes including, but is not limited to: 

• Enrolling a client into a Cavernous Malformation Canada program
• To improve our services and website (using the feedback you provide to improve our services and website) 
• To inform you about activities, events, and opportunities
• To run any surveys, promotions, and newsletters
• To provide support and education activities
• Donating to our organization
• Volunteering for our organization

2.3  We normally collect personal and health information directly from our users. We may collect your information from other persons with your consent or as authorized by law. We inform our users, before or when collecting personal information, of the purposes for which we are collecting the information. 

3. Consent

3.1 We assume your consent to continue to use and, where applicable, disclose personal information that we have already collected, for the purpose for which the information was collected. 

3.2 We ask for your express consent for some purposes. We may not be able to provide certain services if you are unwilling to provide consent to the collection, use or disclosure of certain personal and/or health information. Where express consent is needed, we will normally ask users to provide their consent.

3.3 In cases that do not involve sensitive personal and health information, we may rely on “opt- out” consent. For example, on a rare occasion we may disclose your contact information to other organizations that we believe may be of interest to you, unless you request that we do not disclose your information. You can do this by contacting Cavernous Malformation Canada. 

3.4 We may collect, use, or disclose personal and health information without consent only as authorized by law. For example, we may not request consent when in an emergency that threatens life, health or safety.

3.5 You may withdraw consent to the use and disclosure of personal and health information at any time, unless the personal and health information is necessary for us to fulfill our legal obligations.

4. Limiting Information Collection
We only collect personal and health information lawfully and responsibly, limiting it to what is necessary for our identified purposes. With your consent, we may collect personal and health information from you in person, over the telephone, via email or online.

5. Limiting Use, Disclosure and Retention
Your personal and health information will only be used for the reason we collect it as outlined in 2.2, unless you provide consent or when it is required or permitted by law. We will retain your personal and health information for as long as necessary for the fulfillment of those purposes.
 

Cookies: We use cookies to enhance your experience on our website and to understand how you interact with our content. By using our website, you consent to our use of cookies. We use cookies to improve our services, personalize your experience, and show you relevant content. You can adjust your cookie settings at any time. 

Social media: Please check the privacy policies of social media websites when visiting them or providing personal and health information. Please be aware that any personal and health information you voluntarily share on social media can be accessed, collected, and used by others. We cannot ensure the security of the information you post publicly. When you interact with our content on social media or third-party websites, we may collect personal and health information, including comments or feedback, "Likes" or shares, profile data, and information about your interactions with our content. 

GoDaddy Analytics: We use GoDaddy Analytics to understand how users interact with our website. GoDaddy Analytics collects information such as IP address, browser type, pages visited, and time spent on pages. This information is anonymous and unidentifiable, and used only to improve our website and user experience. GoDaddy’s privacy policy applies to the collection, use, and sharing of this data. 

Third-Party Websites: Our website may contain links to third-party websites that are not owned or controlled by us. We are not responsible for the privacy practices or content of these websites. When you click on a link to a third-party website, you will be subject to the privacy policy and terms of use of that website. We encourage you to review the privacy policies of these websites before providing any personal information.

6. Accuracy
We make every reasonable effort to ensure that personal and health information is accurate and complete. We rely on individuals to notify us if there is a change to their personal and health information. If you are aware of an error in our information about you, please let us know and we will correct it on request.

7. Safeguarding Your Information
We take care to safeguard your personal and health information, using measures that match its level of sensitivity. We do everything we can to prevent unauthorized access, loss, misuse, or alteration of your information. When we no longer need your information, we destroy it securely, either by shredding paper documents or permanently deleting electronic files.

8. Openness
We are committed to openness about our personal and health information management practices. We are open about and provide access to our policies and procedures. We make reasonable efforts to inform individuals about our policies and procedures, the purposes for which we collect, use, or disclose personal and health information, and how to access your personal and health information.

9. Individual Access
Upon request, we will inform you about the personal and health information we hold, its uses, and any disclosures. You have the right to access, review, and correct your information to ensure its accuracy and completeness. For example, we may not disclose information relating to you if other individuals are referenced or if there are legal, security or commercial proprietary restrictions.

10. Challenging Compliance
If you have concerns about how we handle your personal and health information, you can reach out to our designated contact person who will address your issue and ensure we are meeting our privacy commitments. 

Please direct any questions or inquiries with respect to our privacy policy or our practices by contacting:

Cavernous Malformation Canada at contactus@cavernousmalformation.ca

Policy Review

This policy was last updated on September 3, 2024. Cavernous Malformation Canada may update this privacy policy. Changes will be posted on our website. Your continued use after posting constitutes acceptance of this policy. Please review this policy periodically for updates.