Privacy

Our Commitment to Privacy

Cystic Fibrosis Canada (CF Canada) recognizes your right to privacy and pledges to maintain the accuracy, confidentially and security of your Personal Information (PI).  

Our Commitment to Privacy outlines the PI we collect, maintain, safeguard and how we use that information.

Cystic Fibrosis Canada’s privacy practices are based on the federal Personal Information Protection and Electronic Documents Act (PIPEDA) and Quebec’s Loi 25, which has additional protections beyond PIPEDA and other provincial and territorial legislations for the treatment and maintenance of Personal Information.

What do we collect?

Cystic Fibrosis Canada only collects Personal Information for the purposes necessary to deliver and improve our programs, as well as to maintain our relationships with donors, volunteers, families impacted by cystic fibrosis and other service partners.

Your sharing of Personal Information means you agree and consent that we may collect, use and disclose your information in accordance with our Commitment to Privacy. You may withdraw your consent at any time.

The information we collect is the minimum amount needed to establish, maintain and improve our services or programs. This includes:

• Contact information, such as name, address, telephone number, email address(es).
• Donation information such as date of gift, campaigns you have contributed to, the amount and any other relevant gift information.
• Financial information such as payment methods, preferences, billing and banking information to process a donation or registration.
• Other Personal Information used for purposes a reasonable person would consider appropriate for the circumstances. For example, we might record your engagement or opinion on specific programs or initiatives to identify future interest or make improvements.

CF Canada also collects and handles information needed to satisfy the requirements of provincial or federal bodies, such as the Canada Revenue Agency (CRA) for the purpose of generating income tax receipts for eligible donations.

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, by order or requirement of a court administrative agency, legal request or investigation or other government tribunal;
• Where CF Canada believes, upon reasonable grounds, it is necessary to protect the rights, privacy, health, safety or property of an identifiable person or group;
• Where the information is public.

CF Canada endeavours to obtain your consent at the time we collect and process your Personal Information. If the purpose for using your Personal Information changes from the time we obtained your consent, we will seek revised consent before use or disclosure.

We respect your privacy. If you are concerned about the use of your Personal Information as outlined above, please refrain from providing it to us. Please be aware that not sharing your Personal Information may prevent us from offering you CF Canada services and/or programs you have requested or may want to engage with.

How do we protect Personal Information?

Personal Information is only accessible or disclosed to employees, volunteers or contractors who require access to fulfil a relevant function. If Personal Information is required to be disclosed to a contractor, that contractor must only use it for the purpose for which it was disclosed and commits to protecting that information as per our policies.

PI is retained only for as long as it is required for the reasons it was collected. This varies based on the program, service or nature of the PI, and can also be subject to regulations. Cystic Fibrosis Canada practices data minimization (limiting the collection, copies and retention of Personal Information) wherever possible. This means that when your Personal Information is no longer required for the purposes for which it was collected and maintained, the information is archived and then destroyed; either physically or digitally, in a secure manner.

All PI is stored privately and confidentially, in secure locations (either physically or digitally).

Cystic Fibrosis Canada has appointed a senior employee as the “Privacy Officer” (privacy@cysticfibrosis.ca) who provides the necessary oversight over activities to collect, utilize and manage the lifecycle of PI. They accept and handle all privacy related inquiries.

Employees and volunteers are trained to understand what PI is, how it can be collected through fair and lawful means, and that they must only use it for the purpose for which it is collected.

To deliver on our mission and values, PI collected and used by Cystic Fibrosis Canada must be kept accurate and up to date for any transaction while fulfilling the purposes for which it was collected, for as long as it remains in use at Cystic Fibrosis Canada. We periodically review the PI in our custody and may seek to contact individuals to ensure its accuracy.

Your rights

Any individual may submit a request to Cystic Fibrosis Canada to understand their PI that is being collected, used, and with whom it is shared and/or disclosed.

Individuals may also request that their PI be provided, challenge its accuracy and completeness, and amend as appropriate.

In certain situations, Cystic Fibrosis Canada may not be able to provide access to all the PI it holds about an individual. Exceptions to the access requirement will be limited and specific. The reasons for denying access will be provided to the individual upon request. Exceptions may include information that contains references to other individuals, information that cannot be disclosed for legal, security, or commercial proprietary reasons, and information that is subject to solicitor-client or litigation privilege. 

Privacy laws in Canada give anyone the right to inquire about their own Personal Information. Any inquiries or concerns regarding Cystic Fibrosis Canada’s privacy and PI handling practices should be immediately brought to the attention of the Privacy Officer (privacy@cysticfibrosis.ca).

Any such privacy matters will be investigated by the Privacy Officer with the involvement of the appropriate business departments and will be addressed in writing to the requestor, in a timeframe which is reasonable under the applicable laws. Cystic Fibrosis Canada will investigate and respond to all inquiries.