Privacy Policy

Canadian Chordoma Network Privacy Policy

At the Canadian Chordoma Network (“CCN”), we recognize the importance of privacy and are committed to maintaining the accuracy, confidentiality, and security of your personal information. This privacy policy describes the personal information that CCN collects, how we manage that information and the circumstances under which we may disclose that information.

CCN’s privacy policy is based upon the Canadian Standards Association’s Model Code for the Protection of Personal Information as well as the requirements of applicable privacy legislation. As this policy is subject to change due to legal and regulatory requirements, we encourage you to periodically check our website for updates to this policy.

What is personal information?

Personal information is any information about an identifiable individual, other than an individual’s business title or business contact information. Personal information (e.g. name, address, age, credit card information, banking information) does not include information that cannot be associated with or tracked back to a specific individual. Information that is publicly available, such as a telephone directory listing, is also not considered to be personal information.

What information does CCN collect?

1) Personally identifying information

CCN only collects personally identifying information about donors, clients, volunteers and event participants for fundraising, public education and advocacy purposes, program and service delivery, community building, as well as to establish, maintain and manage our relationship with you.

Your provision of personal information to CCN means that you agree and consent that we may collect, use and disclose your personal information in accordance with this privacy policy. If you do not agree with these terms, please do not provide any personal information to CCN. Failure to provide your personal information to CCN may prevent us from offering you the services and/or programs you have requested.

The information CCN collects is the minimum amount we need to establish and maintain a service, volunteer, participant, donor or program relationship with you. This includes but is not limited to:

  • contact and identification information, such as your name, address, telephone number and e-mail address
  • donation information such as date of gift, amount of gift, the campaign you contributed to, name of spouse or partner if it was a joint gift
  • financial information such as your payment methods and preferences, billing and banking information (credit card number and expiry date or chequing account transit numbers, in order to process your donation); for online financial transactions such as donations and event registrations, we process standard credit card information (card number, card type and expiration date) via a secure, 256-bit encrypted Secure Sockets Layer (SSL) session. SSL is the proven standard for secure web transactions.

We may be required by law to collect certain information about you. For example, some of the information CCN collects is needed in order to satisfy the requirements of the Canada Revenue Agency (CRA) (e.g. providing information to charities for processing income tax receipts).

CCN generally collects your personal information directly from you and only with your consent. However, if the individual who has a relationship with CCN is a minor, information may be collected from a parent or legal guardian. In general, CCN will not collect or use personal information about you from a third party without your consent. CCN will usually obtain your consent at the time that we collect your personal information. If your personal information will be used or disclosed for any additional purposes that are not outlined in this policy, CCN will advise you of these new purposes before such use or disclosure.

(2) Website practices on

Usage tracking

Our websites may automatically record some general information about your visit using Google Analytics which we use for statistical analysis to help make sure our sites are more useful to visitors and make the most efficient use of donor dollars in our marketing efforts through targeted advertising.  This information does not allow us to identify you individually. This information might include the:

  • Internet domain for your Internet service provider, such as “” or “” and the IP address of the computer accessing the website, such as “ppp-55”;
  • Type of browser you are using, such as Internet Explorer or Chrome;
  • Type of operating system you are using such as Windows or Macintosh;
  • Date and time of the visit to our site, the pages of our site that were visited, and the address of the previous website you were visiting if you linked to us from another website
  • Age category, gender, and affinity interests as determined by Google Analytics Demographic and Interest reports

If you wish, you may opt out of being tracked by Google Analytics by disabling or refusing the cookies; by disabling JavaScript within your browser; or by using the Google Analytics Opt-Out Browser Add-On.

Data collected for Web analytics purposes goes outside of Canada to Google servers and may be processed in any country where Google operates servers. Data may be subject to the governing legislation of that country. For further information about Google Analytics, please refer to the Google Analytics terms of service.


We also use "cookies" that identify you as a return visitor and which can help us tailor information to suit your individual preferences. A cookie is a piece of data that a website can send to your browser, which may then store the cookie on your hard drive. The goal is to save you time and provide you with a more meaningful visit and to measure website activity. Cookies do not contain any personally identifying information. Many browsers, however, allow you to disable cookie collection if you wish, or inform you when a cookie is being stored on your hard drive.

Targeted advertising

As you interact with the CCN website, third party advertising partners may use cookies that we place on your computer, tracking pixels, web beacons and similar technologies to identify you as a visitor to our websites, and present you with targeted ads to help us promote CCN. You can opt-out of the use of your information for select ad targeting by visiting this site:, and also by setting up “Do Not Track” options available through your browser. We also occasionally provide your personal information to trusted advertising partners for the purpose of presenting you with targeted ads on behalf of CCN. You can request that your personal information not be shared with our advertising partners by contacting

Online transactions

We protect the security of your transactions on our website by using SSL (Secure Sockets Layer) web server certificates that offer secure communications by encrypting all data going to and from CCN websites.

External Links

This policy discloses the privacy practices for our website.   CCN provides links to other websites which CCN believes may be of interest to you. As CCN has no control over the content of any of these websites, these links may be updated or deleted as CCN deems appropriate.

Please be aware that CCN is not responsible for the privacy practices of other websites that we link to. We encourage you to read the privacy statements of each and every website that requests personal information from you.

Third-Party Social Media

CCN’s use of social media serves as an extension of its presence on the internet. Social media account(s) are public and are not hosted on CCN’s servers. Users who choose to interact with CCN via social media should read the terms of service and privacy policies of these third-party service providers and those of any applications used to access them.

How does CCN use your personal information?

As explained above, CCN uses your personal information, to process donations, to respond to your requests for services and information, to keep you informed about CCN activities and other activities in the chordoma community, to build the chordoma community of patients, their families and caregivers, and for fundraising. For example, if you have expressed an interest in participating in a fundraising event, such as Chords for Chordoma, we may send you information about other opportunities to support or participate in CCN’s activities.  CCN is a not for profit and does not issue tax receipts in connection with funds raised, but for certain events, the net funds are provided to Canadian Cancer Society, or such other charity as may be designated, along with sufficient information about the donors as is required by Canada Revenue Agency so that such charity can issue appropriate receipts.

CCN makes every attempt to use anonymous or aggregate information whenever possible. We may also use information that doesn’t personally identify you in the following ways:

  • to assist in the development of new programs, events, and services,
  • to provide donation recipients with summary or aggregate information about our donations, programs and services,
  • for internal research purposes,
  • to develop advertising based on donor preferences.

When does CCN disclose your personal information?

CCN shares your personal information only with employees and/or volunteers who require such information to establish, manage and maintain our relationship with you. We may also disclose your personal information to third party service providers whom we engage to fundraise, process your donation, deliver a support service, support your volunteer activities, or answer your inquiry. These third party providers only have access to personal information that is needed to perform their services and may not use it for any other purpose. They are bound by agreements that obligate them to protect your personal information. Note that in working with our service providers, your personal information may be accessible in, or transferred to, a foreign jurisdiction. Such information may be provided to law enforcement or national security authorities of that jurisdiction in order to comply with foreign laws.

There are circumstances where the use and/or disclosure of personal information is justified or permitted without consent. These circumstances may include:

  • where required by law or by order or requirement of a court, administrative agency or other governmental tribunal,
  • where CCN believes, upon reasonable grounds, that it is necessary to protect the rights, privacy, safety or property of an identifiable person or group,
  • where the information is public.

Fundraising helps to ensure the on-going stability and quality of the services and programs CCN provides to individuals living with cancer. As part of our fundraising initiatives, we may exchange donor information with other registered not for profits and with registered charities. If you do not wish CCN to trade your name in this manner, or if you do not want to receive any marketing or fundraising materials from CCN, you can contact us at Please allow up to 12 weeks for your request to be processed, as campaigns may already be in progress.

Accuracy of information

CCN aims to ensure that any personal information provided is accurate, complete and current as required for the purposes for which the information is used.

Safeguarding your personal information

CCN takes reasonable measures to ensure that personal information is kept safe from loss or theft, unauthorized access, use, copying, disclosure or modification. Safeguards include physical, organizational and technical measures, including but not limited to:

  • key to access to premises,
  • Restriction of access to files on a “need to know” basis,
  • never leaving personal information unattended and in plain view,
  • Firewalls, strong passwords and software solutions for technical security, and
  • CCN ensures that employees are aware of the importance of safeguarding any personal information that they are privy to.

Retention of personal information

CCN keeps personal information only as long as it is required for the reasons it was collected. The length of time we retain information varies, depending on the program, service or event and the nature of the information, for example we keep financial information for 6 years, in accordance with CRA rules and regulations. The retention period may extend beyond your relationship with us. When your personal information is no longer required for CCN purposes, the information is either physically destroyed or deleted.

Inquiries and requests for access

If you have any questions about this privacy policy, or would like to access your personal information, please contact us. All formal requests should be made in writing.

Canadian Chordoma Network
E-mail: privacy@canadianchordomanetwork

Please note that a fee may apply in processing access requests depending on the type and volume of information requested.