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Privacy Policy

The Canadian Association for Porphyria (CAP) is in compliance with Canada's Personal Information Protection and Electronic Documents Act (PIPEDA). CAP insists upon protecting the personal information of anyone who contacts the association in any way. CAP is also committed to being transparent and clear to all individuals who wish to know the purpose and safety involved in collection of their personal information.

Personal Information
Personal information is any factual or subjective information, recorded or not, about an identifiable individual (as defined by the Office of the Privacy Commissioner of Canada). CAP collects names, addresses, phone, and fax numbers, some consented genealogical and medical data, and VISA/MasterCard/cheque information (donors only). Financial information is not entered into the database and remains confidential after a transaction takes place. Other personal information is recorded in our assocation's database system.

The database system is used for many purposes. Names and addresses are needed to send out educational material, reply to requests, keep members updated and informed, and for geographical statistics. Other personal information is used to personalize educational material packages, as well as for medical statistics and research information. No personal information is collected without direct or implied consent from the individual. Personal information can be collected by phone, e-mail, regular mail, fax, or in person from our members themselves or next of kin who act as a contact person.

We practice limited collection procedures, and do not collect personal information without the knowledge of the individual.

An Open and Honest Organization
CAP is committed to being open to all individuals who contact the organization. Individuals can access, change or remove their personal information from our records by contacting our organization and requesting that such a task is completed. If an individual no longer wishes to receive e-mail or any sort of contact from our organization, he or she can contact our organization and he or she will be removed from our database system.

Disclosure
Staff at CAP has full access to all of the association's resources, files and computer systems. The executive (president, treasurer, secretary) also has access to particular information on a need-to-know basis when dealing with mailings and finances. Both staff and executive are well trained and fully understand the principles of this policy as well as the Association's commitment to confidentiality and mission to improve the quality of life for those affected by porphyria.

When necessary and with consent, personal information may be disclosed to regional coordinators, national directors, and the rest of the board of directors for specific purposes. We do not disclose specific personal information to any third parties, other than publicly available contact information needed to send out publications.

Non-personal Information
The CAP website does not make use of "cookies" nor does it collect or record any non-personal information such as computer IP addresses or browsing history. We do not send out personal or mass e-mails unless an individual has consented to receive it. To receive a mass e-mail, persons must have signed up in advance. If a person no longer wants to receive e-mails from the Association, they can unsubscribe by writing back to the Assocation. This policy discloses the privacy practices for the Canadian Association for Porphyria website. However, this site contains links to other sites. Once linked to another site, an individual is subject to the privacy and security policies of the new site.

Changes, Recourse & Complaints
Any changes to this policy will be posted on the website and made available for all members to access. We pledge to stay in compliance with all privacy laws and applicable acts that may change in the future.

If an individual has a complaint about the privacy policy or behavior of our organization, he or she may contact our Chief Privacy Officer or the Office of the Privacy Commissioner of Canada at the following two addresses:

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