Privacy Policy

1. Objective
At Alpha-1 Canada respecting privacy and the sensitivity of information is an important part of our commitment to our patients, caregivers, their families, our supporters, the general public and our employees. The objective of the Alpha-1 Canada Privacy Policy is to promote responsible and transparent personal information management practices in a manner consistent with the provisions of the Personal Information Protection and Electronic Documents Act (Canada) (PIPEDA) and the Personal Health Information Protection Act, 2004 (PHIPA).
2. What this policy covers
This Policy covers our treatment of the personal information we collect from patients, caregivers, their families, our supporter, the general public and employees, in the course of our information, education and support activities. Specifically, this Policy addresses how information is collected, securely maintained, used and ultimately disposed of properly.
3. Purposes For Collection of Personal Information
Alpha-1 Canada collects personal information for the following purposes:
3.1. for administrative or management requirements
3.2. to enhance our relationships with patients, caregivers, their families, our supporters and the general public
3.3. to answer questions and respond to feedback submitted by patients, caregivers, their families, our supporters and the general public
3.4. to issue tax receipts for charitable donations
3.5. to establish and maintain mailing contact lists
3.6. to administer programs
3.7. to establish, maintain or terminate any Alpha-1 Canada contractual relationship
3.8. to compile statistics on the prevalence of Alpha-1 Antitrypsin deficiency in Canada
4. How Personal Information is Maintained
We do not sell, barter, trade or give away the personal information of anyone to any third parties, without their authorization. For example, we do not provide our mailing lists to any other parties. Alpha-1 Canada stores and maintains personal information in conformity with the requirements of the Personal Information Protection and Electronic Documents Act and the Model Code for the Protection of Personal Information created and approved by the Canadian Standards Association.
5. Web Site Links
Our printed materials and web site contain links to other web sites. Please be aware that Alpha-1 Canada is not responsible for the privacy practices of these other sites. We encourage web site visitors to read the privacy policies of every site that collects personal information. This Privacy Policy applies to Alpha-1 Canada only.
6. IP Addresses
Like most web sites, our server logs visitors’ IP addresses. No effort is made to connect IP addresses with individuals. Rather, we use IP address data in aggregate to get broad information about how our site is used.
7. Application of the Canadian Standards Association’s Model Privacy Code
Alpha-1 Canada applies the ten principles of the Canadian Standards Association’s Model Privacy Code as follows:
7.1. Accountability
Alpha-1 Canada is responsible for the personal information collected and maintained by it and which is under its control. In order to fulfill this responsibility:
7.1.1. We have designated an official to be responsible for the day-to-day care and control of personal information, namely our Executive Director
7.1.2. Alpha-1 Canada has taken the following measures to ensure compliance with this Privacy Policy: development of procedures to protect personal information development of procedures to receive and respond to complaints and inquiries training our staff and volunteers about our policies and practices respecting personal information development and distribution of information to our staff, volunteers and the general public explaining our policies and procedures respecting personal information.
7.2. Identifying Purposes
Alpha-1 Canada is committed to openness regarding its collection and use of personal information. As discussed, we collect and use personal information for the limited purposes outlined in paragraph 3 above.
To demonstrate this openness, we require the consent of anyone prior to using their personal information for any purpose other than that for which it was originally collected.
7.3. Consent
7.3.1. Alpha-1 Canada is committed to ensuring that individuals are aware of how their personal information is used. We are dedicated to obtaining the consent of individuals who provide us with their personal information. To this end, all our employees or agents are instructed to provide information about how personal information is used by us to all interested individuals who inquire, as well as obtain the consent of those who provide their personal information.
7.3.2. We may periodically request written confirmation to ensure that the personal information collected and maintained by us is up-to-date and accurate. We also may ensure that we have continuing consent to the use and retain personal information.
7.3.3. Alpha-1 Canada will disclose personal information, without notice, only if required to do so by law or in the good faith belief that such action is necessary to: conform to obligations imposed by law or statute meet an emergency need; and/or as required pursuant to a criminal investigation
7.4. Limiting Collection
Alpha-1 Canada restricts the collection of personal information only to that information that is necessary for the limited purposes noted above in paragraph 3. We are committed to collecting personal information in a fair, open and lawful manner. For this reason, Alpha-1 Canada does not indiscriminately collect personal information. We collect personal information to fulfill the purposes noted in paragraph 3 above only, and for no other purposes.
7.5. Limiting Use, Disclosure And Retention
Alpha-1 Canada does not use personal information for purposes other than those for which it was originally collected, unless it has first obtained the consent of the person from whom such information was received. We retain personal information only for as long as it is needed, or for as long as required by law, and only for the fulfillment of the purposes for which it was originally collected.
7.6. Accuracy
Alpha-1 Canada is committed to maintaining accurate, complete and up-to-date personal information. If an individual is aware of changes to the personal information given to us, they may simply inform us of the changes and we will update our records accordingly.
Any individual may check and correct their personal information by contacting us through the Executive Director.
7.7. Safeguards
Alpha-1 Canada has developed and implemented security safeguards appropriate to the sensitivity of the personal information kept by us. These security safeguards include:
7.7.1. physical security measures, such as encryption software locked cabinet storage and restricted access to areas where personal information is stored.
7.7.2. internal employee/volunteer security measures, including restricted computer access, confidentiality agreements and limited access to where personal information is stored.
7.7.3. if we use the services of any third parties to process personal information, we will enter into legal agreements, which require them to protect this personal information in a manner acceptable to us. In entering into these legal agreements, we do not transfer any interest in this personal information to them. Rather, the purpose of these legal agreements is to ensure that the personal information delivered to third parties is maintained at a level of security equal to that provided under this Privacy Policy.
7.7.4. if we collect information from individuals or from third parties we will have obtained the necessary consent to do so, or will do so as otherwise permitted by law. Third parties include, as examples, e-mail service providers, healthcare providers we may contact at an individual’s request, references and other persons that we need to contact to provide services, to establish, manage or terminate an employment relationship, or for administrative or management purposes.
7.7.5. At present the only personal information that is held by service providers is e-mail addresses held by Constant Contact (their privacy policy can be viewed here: and any information entered into our web site by people who signed up for our mailing list in this manner (our web site host’s privacy policy can be viewed here:
7.7.6. We also ensure that any of our employees/volunteers who deal with personal information are properly trained and are aware of the necessary and appropriate measures required to protect personal information.
7.7.7. Any personal information kept by us is disposed of once it is no longer needed to meet the purposes for which it was collected, unless we receive permission to keep such information, or it is kept as required by law.
7.8. Openness
Alpha-1 Canada makes information about its policies and practices respecting the collection and maintenance of personal information available to all interested parties. We are pleased to answer any questions regarding the collection and maintenance of personal information; please direct letters or e-mail to our Executive Director.
7.9. Individual Access
Individuals can also request access to their personal information held by us. However, we reserve the right to confirm the identity of the person seeking access to personal information before complying with any access requests. Please forward requests in writing or via e-mail to our Executive Director. Upon request, we will inform the requester if we have any of their personal information in our care and control, as well as providing the details of such personal information. In the unlikely event that we are unable to provide access to all of the personal information we hold about an individual, then the reasons for the denial of access will be provided.
7.10. Challenging Compliance
As noted above, Alpha-1 Canada has designated an official who is responsible for the day-to-day care and control of personal information. This official, the Executive Director, will receive and respond to all information requests regarding our privacy policy or about personal information under our care and control. In order to be added or removed from any of the lists Alpha-1 Canada maintains, please write or e-mail such requests to the mailing list administrator at
We investigate all complaints received by us and will respond in writing in a timely manner. If any complaint is found to be justified, we will take appropriate measures to resolve the matter to the satisfaction of the complainant.
8. Changes to this Privacy Policy
Since Alpha-1 Canada regularly reviews all of its policies and procedures, including the laws that impact upon our operations, we may change our Privacy Policy from time to time to ensure that it remains compliant with the law.
9. How to add, remove or amend personal information
If, at any time, an individual wishes to amend their personal information with us or remove their name from our mailing lists, the may simply inform us by email at:
10. Effect
10.1. Alpha-1 Canada may amend, suspend or cancel this policy at any time.

DISCLAIMER:This website is designed to support, not replace, the relationship that exists between you and your physician. It is not the intention of this website to provide specific medical advice but rather to provide the Canadian Alpha-1 Community with information to better understand their health and their diagnosed disorder. Specific medical advice will not be provided and Alpha-1 Canada urges you to consult with a qualified physician for diagnosis and for answers to your personal questions.
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