Sjögren’s Society of Canada Privacy Statement

At Sjögren’s Society of Canada (SjSC), we recognize the importance of privacy and are committed to maintaining the accuracy, confidentiality and security of your personal information. This privacy statement describes the personal information that the SjSC collects, how we manage that information and the circumstances under which we may disclose that information.

SjSC’s privacy policy is based upon the requirements of applicable privacy legislation.

What is meant by personal information?

Personal information is any information about an identifiable individual, other than an individual’s business title or business contact information. Personal information (i.e. 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 book listing, is also not considered to be personal information.

What information does Sjögren’s Society of Canada collect?

Personally Identifying Information:

Sjögren’s Society of Canada only collects personally identifying information about donators, volunteers, and members to establish, maintain and manage our relationship with you.

Your provision of personal information to the SjSC 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 SjSC. Failure to provide your personal information to SjSC may prevent us from offering you the services and/or programs you have requested. We will discuss the impacts of withdrawal of consent with you at that time.

The information SjSC collects is the minimum amount we need to demonstrate and maintain a service, volunteer, member, donator or relationship with you. This includes:

  • contact and identification information, such as your name, address, telephone number and e-email address
  • donation information such as amount of gift
  • financial information such as your billing and banking information (credit card number and expiry, in order to process your donation)
  • other personal information used for purposes that a reasonable person would consider appropriate in the circumstances (e.g. If you have demonstrated an interest in volunteering, we may send you information regarding volunteering and upcoming events)

Some of the information SjSC collects is needed in order to satisfy the requirement of the Canada Revenue Agency (CRS) (e.g. Income tax receipts). There are also 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 SjSC 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

SjSC generally collects your personal information directly from you and only with your consent. In addition, SjSC will not collect or use personal information about you from a third party without your express consent. SjSC will usually obtain your consent at the time that we collect your personal information. If the purpose for using your personal information changes from the time since such consent was obtained, SjSC will advise you of this purpose before such use or disclosure.

How does SjSC use your personal information?

As explained above, SjSC uses your personal information for membership, to send e-newsletters, to process donations, to respond to requests for services and information, and to keep you informed about SjSC activities.

We may also use the information you provide to us 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 information materials based on donor preferences

When does SjSC disclose your personal information?

SjSC shares your personal information only with employees and/or volunteers who require such information to establish, manage and maintain our relationship with you.

Accuracy of Information

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

Retention of Personal Information

SjSC 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 generally 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 SjSC purposes, the information is either physically destroyed or deleted.

Links to other websites from

SjSC provides links to other websites which SjSC believes may be of interest to you. As SjSC has no control over the content of any of these websites, these links may be updated or deleted as SjSC deems appropriate.

Please be aware that SjSC 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.

Inquiries and Requests for Access

If you have any questions about this privacy policy, or would like to access your personal information, please contact our office. Please note that as we cannot guarantee the security of Internet mail, all formal requests to access personal information should be made in writing.