Privacy Policy

Approved October 20, 2020

The Canadian Hereditary Angioedema Network (CHAEN) is committed to protecting the privacy of the personal information of its members, patients, website visitors and all users of its services. This Privacy Policy has been prepared to affirm CHAEN’s commitment to maintaining high standards of confidentiality, to provide information on CHAEN’s practices concerning the collection, use and disclosure of your personal information and to comply with the Personal Information Protection and Electronic Documents Act (PIPEDA) and other applicable statutes.

We operate on the basis of a Privacy Policy and related procedures that guide the handling of the personal information we collect. We have created this privacy policy statement to demonstrate our commitment to protecting the privacy of our Members and potential website visitors. This policy and related procedures are consistent with The Personal Information Protection and Electronic Documents Act (PIPEDA).


This policy deals only with personal information handled by CHAEN. Personal information is information about an identifiable individual collected from or supplied by that individual to allow CHAEN to provide the product or service requested by the individual. The following explains how CHAEN handles personal information. CHAEN reserves the right to change this policy and it may be updated periodically. These changes may affect our use of your personal information. Accordingly, please check for changes regularly.


Certain processes available on this website are used to collect personal or corporate information such as “Applying for Membership” and “Registering for Events”, etc. CHAEN collects no personal information about you unless you choose to provide that information to us. Any personally identifiable data about members, customers or website visitors is stored securely and used only for the purpose for which it is provided to CHAEN.


CHAEN is accountable for all personal information under its control. CHAEN’s Privacy Officer is the Executive Director who is designated as responsible for the association’s privacy policy. Contact information for the Privacy Officer is noted at the end of this policy.


The purpose for which CHAEN collects personal information will be identified at or before the time the information is collected. CHAEN may collect personal information for the purposes of:

Administering the association’s membership and providing member services

  • Registering for events
  • Purchasing products and services
  • Facilitating networking between members
  • Processing and administering the above or other purposes, as necessary

CHAEN will not use personal information for any other purpose than that identified at or before the time of collection.


CHAEN seeks consent for all personal information it collects, uses and discloses through information provided to individuals prior to collection, or at the time of collection.

If you have voluntarily provided information, you have consented to the collection, use and disclosure of your personally identifiable information as described in the privacy policy. As required by the PIPEDA, CHAEN will not use personal information for any purpose other than that for which you consented. Should CHAEN require personal information for a new purpose, you will be contacted to seek consent for that new use.


CHAEN does not collect, use or disclose personal information of individuals except when individuals give consent and provide the information on a voluntary basis. There may be occasions where more specific personal information is necessary for us to proceed with a request for information or provide a product or service. In such cases, we will provide you, with a description on the information we need. In all cases, CHAEN limits the amount and type of information collected to only the personal information that is required to provide the individual with the requested information, product or service. CHAEN collects only information that is voluntarily provided by you and undertakes that such information will be kept strictly confidential.

We retain personal information only as long as is necessary to provide the individual with the requested product, service or information. In some cases, however, legal reporting and retention requirements necessitate that CHAEN retain information for a specific amount of time. In general, CHAEN retains information for a period not longer than three years.

CHAEN does not sell or trade any personal information with third parties. CHAEN may transfer information to service providers where information processing is outsourced by the association in the course of its administrative procedures or member services in specific cases. Where personal information is transferred to a service provider for processing, CHAEN requires the service provider to respect this Privacy Policy and we restrict them from using or disclosing personal information transferred to them for any purpose other than the provision of services to CHAEN. Any personal information that CHAEN retains is kept in such a manner as to ensure its security and confidentiality at all times.


CHAEN may share aggregate information about its Members with other Members, with prior permission.

Such aggregate information is used to give CHAEN demographic data about its Members in order to improve the organization and the programs and services we provide.

The information you provide to CHAEN – such as your name, address, etc. – allows CHAEN to inform you about upcoming events, recent postings to the website and to notify you of issues, events or special reports which may be of interest to you. By becoming a Member of CHAEN or by requesting information or registering for events offered by CHAEN, you are giving CHAEN permission to contact you by way of the information you provide. Members may choose not to be contacted by CHAEN – please contact the Executive Director (see information below).


The server for the CHAEN website ( may automatically record some general information about your visit, such as:

  • The Internet domain for your Internet service provider, such as “” or “” and IP address of the computer accessing the website.
  • The type of browser you are using;
  • The type of operating system you are using (such as Macintosh, Unix, or Windows)
  • The date and time of your visit to our site and the web pages that you visit on our site, along with the address of the previous website you were visiting, if you linked to us from another website.
  • If you are logged into our site, your username will be recorded along with the date and time of your visit, which pages you viewed, etc.

CHAEN uses this information for statistical analysis, to help us make our site more useful to visitors. We may disclose this information in aggregate only to third parties such as our web developer or use it for auditing purposes.

The CHAEN website may use “cookies” that identify you as a return visitor. 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. So, when you come back to visit CHAEN’s website again, information can be tailored to suit your individual preferences. The goal is to save you time and provide you with a more meaningful visit and to measure website activity. Browsers such as Chrome allow you to disable cookie collection if you wish or inform you when a cookie is being stored on your hard drive.

Specifically, we use cookies to allow Members to access the web site with features such as the “Remember Me” function without logging into the website each time.


This policy discloses the privacy practices for the CHAEN website ( However, the CHAEN website may contain links to other sites. Once you link to another site, you are subject to the privacy and security policies of the new site. CHAEN encourages you to read the privacy policies of all websites you visit especially if you share any personal information.


CHAEN respects the privacy of our Members, patients, sponsors, potential web site visitors and Internet users and will protect that privacy as vigorously as possible. We store personal information in electronic and physical files that are secure. Our security measures include:

  • Secure locks on filing cabinets
  • Using industry standard techniques such as firewalls, encryption, intrusion detection and restricted access to records and to equipment, including computers and web servers

Unfortunately, no data transmission over the Internet can be guaranteed 100% secure. As a result, while we strive to protect your personal information, CHAEN cannot ensure or warrant the security of any information you transmit to us or receive from us electronically. This is especially true for information you transmit to CHAEN via e-mail. CHAEN has no way of protecting that information until it reaches us. Once your transmission is received CHAEN will make its best efforts to ensure its security on our servers.


CHAEN makes every effort to keep personal information as accurate, complete, current and relevant as necessary for the identified purposes. CHAEN routinely updates personal information, as changes are supplied by the Member to the association office.

CHAEN makes its Privacy Policy and related procedures for managing personal information readily available to Members, on request. CHAEN also provides access to the Privacy Policy and related procedures to Members and the public on the CHAEN website and/or in written form. Any questions about the handling of personal information by CHAEN can be raised with the Privacy Officer.

At the written request of an individual, he or she may view or edit their personal information, as collected by CHAEN. The association will inform them of what personal information it has about the individual, what it is being used for and, in cases where it has been disclosed, to whom it has been disclosed. There may be exceptional circumstances as provided by the PIPEDA.

To make a request, please forward a letter by e-mail or postal mail to our Privacy Officer of CHAEN at the address indicated below. In your request, please include the following information:

  • Name
  • Contact details
  • The nature of your request, including whether you wish to view and/or edit information or inquire regarding use and/or disclosure

CHAEN will reply to all requests in no later than thirty days after receipt of the request, or if we are not able to respond within this time, we will send you a notice of extension. If CHAEN is unable to disclose all personal information we hold on you, we will give you a reason for our inability to do so, unless prohibited by law.


If you have any questions or concerns about this Privacy Policy or about CHAEN’s information handling practices, please contact us at:

Attn: Privacy Officer
Canadian Hereditary Angioedema Network
20 Carlton Street, Suite 123
Toronto, Ontario, Canada M5B 2H5

Please also visit the Office of the Privacy Commissioner of Canada’s website at

Funding for Canadian Hereditary Angioedema Network has been generously provided by unrestricted grants from:


CSL Behring


Contact Us

20 Carlton Street, Suite 123
Toronto, ON M5B 2H5
Tel: 416-585-3000

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