Privacy Policy

General Provisions

Board Members, Staff, Contractors and Volunteers conducting business/providing support on the AAMAC’s behalf shall all be bound by this AAMAC Privacy Policy. The AAMAC, its Board Members, Staff, Contractors and Volunteers hereby adopts the principles developed by the Canadian Standards Association for the protection of personal information (“The Model Code”), and hereby appoints the Secretary of the Board of Directors to oversee the agency’s compliance.


The Aplastic Anemia and Myelodysplasia Association of Canada (AAMAC) is a registered federal charity working to improve the lives and medical treatment of Canadian myelodysplasia, aplastic anemia and paroxysmal nocturnal hemoglobinuria patients. We accomplish this by:

  • Helping our members and patients understand their diagnosis and treatments for the diseases;
  • Building a National Support Network to connect members and patients with others;
  • Fostering public awareness of the diseases;
  • Advocating for access to relevant drugs and treatments;
  • Keeping our members and patients up to date on new treatment developments, conferences, etc.;
  • Building connections with like-minded associations with similar interests;
  • Financially supporting medical research related to the diseases;
  • Supporting, in principle, Canadian Blood Services & Héma-Québec’s blood and bone marrow programs.

AAMAC is staffed almost entirely by volunteers who strive to serve our members based on AAMAC’s Mission Statement. AAMAC is committed to protecting the privacy of our members. All information collected, used and/or disclosed by AAMAC is done so in accordance with the following Privacy Policy.

Information We Collect

According to PIPEDA (the Personal Information Protection and Electronic Documents Act), Personal information is information about an “identifiable individual”, but does not include the name, title, business address or business phone number of an employee of an organization. Most of the information we collect is personal information. The types of personal information that we collect may include:

  • name, address, phone number, fax number, and e-mail address of patient, patient’s family members, and patient’s friends
  • patient’s diagnosis, year of diagnosis, age at diagnosis
  • patient’s doctor’s name, hospital
  • medication, previous medical history
  • notes on volunteer roles
  • credit card information

Information is also collected through registration for support meetings and annual general meetings and conferences.

AAMAC collects no personal information about you unless you choose to provide that information to us. The information you provide to AAMAC – such as your name, address, e-mail etc. – allows AAMAC to provide you with appropriate and meaningful information and to connect you (where you request) to a suitable National Support Network volunteer. It also enables us to inform you of issues or events which may be of interest to you. Any personal data about our members or website visitors is stored securely and used only for the purposes stated below.

Members: the new Canada Not-for-Profit Charities Act requires us to disclose the name and contact information of other members if so requested by a member. No other information will be disclosed.

Supporters: By becoming a supporter or by requesting information or registering for events offered by AAMAC, you give AAMAC permission to contact you by way of the information provided. None of your information will be disclosed to any other person without your permission.

How We Use the Information

AAMAC may use the personal information that you provide as follows:

  • To correspond with you, by either mail, e-mail, phone or fax
  • To track statistics that help us improve our member services

Special Event Registration Information

AAMAC respects your confidentiality and does not disclose your name or other personal information to any third party except as stated above for members or specifically provided as follows: AAMAC routinely offers patients the opportunity to speak with other patients about the diseases. The AAMAC also offers support group meetings and annual meetings, for which individuals are invited to register. The information collected on registration forms for these events is used to produce badges and to contact the individuals with specific details about the event (e.g. location, timing, background papers, etc.). It is also used to produce a registrants’ list, which may be distributed to organizers of the events (e.g. to make nametags).

Payment Data Collected

All credit card information collected is used in payment approval and processing only. AAMAC only retains your credit card information as long as legally required for auditing purposes, and then destroys it in a timely and secure manner.


The nature of the Internet is such that it passively and automatically collects certain information about a user’s traffic patterns, linked to their Internet Protocol (IP) addresses. These are unique Internet “addresses” assigned to all web users by their Internet Service Providers (ISP). IP addresses are automatically logged by web servers.

Our website is hosted on servers owned and managed by a third-party, Hypernet Inc. Any personal information collected on our behalf by Hypenet Inc., such as server log data (see below), is managed in accordance with this privacy policy, and is protected by applicable law.

Host Server Logs

The host’s servers automatically log information about visits to our website in the normal course of establishing and maintaining web connections. Server logs record statistical information such as visitor’s IP addresses, type of operating systems, time and duration of visit, web pages requested, and identify categories of visitors by items such as domains and browser types. These statistics, if collected, are reported in aggregate form to the web server’s staff, and are used to improve our website and ensure that it provides the optimal web experience for visitors.


The AAMAC website may use “cookies”. A cookie is a file created by a website to store information on your computer, such as your preferences when visiting that site.

When You Leave the AAMAC Website

The AAMAC website contains links to other sites. Once you click the link to another site, you are subject to the privacy policy of the new site. Other sites to which we provide links may be governed by a different policy, so be sure to review the privacy policies of all externally-linked sites.

Our Commitment to Security

We have put in place appropriate physical, electronic, and managerial procedures to safeguard and prevent unauthorized access to personal information, and ensure that the information we collect is used for the purposes stated above.

AAMAC uses password protection and other technology to protect personal information from unauthorized third party access, alteration, theft or misuse.

How You Can Access or Correct Information

You may change or modify information that you have already provided by contacting AAMAC by phone, fax, or email.

If you have questions regarding this privacy policy or believe your personal information has been mishandled, please contact the Privacy Officer.

Revision 1, Approved 2016-01-28
Replaces AAMAC Privacy Policy (approved 22-Jan-2005)