The Genetic Aortic Disorders Association (GADA) Canada

Privacy Statement

In this Privacy Statement, the terms “the Association” “we” and “our” refer to the Genetic Aortic Disorders Association (GADA) Canada, which includes its legal Affiliates (Contact Representatives) and registered volunteers. This Privacy Statement provides you with information about how we collect, use and disclose your personal information.

Collection of Personal Information

The Association collects personal information about you only when you voluntarily provide it. Typically, we will seek consent for the use or disclosure of your personal information at the time of collection. In certain circumstances, consent may be sought after the information has been collected but before use (e.g., when we want to use information for a purpose not previously identified).

The Association collects information (name, address, telephone number, fax number, e-mail address and credit card number) provided by you when you request information be sent to you, become a member, place orders for any of the Association‘s products, services, programs or register for our special events. We may also ask you for a limited amount of optional personal health information, if applicable, (e.g., whether it is yourself or another individual that has Marfan Syndrome, other statistical information such as age range, gender; and the name of your treating professional) on the membership application and/or request for information intake forms. We do not, as a condition of your membership or the supply of a product or service, require you to consent to the collection, use or disclosure of information beyond that required to fulfill the explicitly specified and legitimate purposes for which the information is being provided.

The form of consent that we seek, whether it be expressed or implied, will largely depend on the sensitivity of the personal information and the reasonable expectations of the individual in the circumstances. You may withdraw consent at any time, subject to legal or contractual restrictions and reasonable notice.

If you wish to withdraw your consent at any time please contact the Association’s Executive Director using the contact information provided below.

Use and Disclosure of Personal Information

Since its inception in 1986 the Association has not sold, rented or traded its membership/donor information to or with others. The personal information we now collect or collected in the past from you will continue to be used by the Association to provide the services or carry out the transaction you requested or authorized. This may include using your personal information for the following purposes:

• Monitoring your membership status and, providing you with membership services which includes sending you newsletters and other related information;

• Sending you products or information that you have ordered or requested from us;

• Billing you for membership and/or for products, services or special events that you have subscribed to; and

• Doing all the things necessary to administer your requested services and to develop and maintain our relationship with you and communicate with you.

In addition, if you have chosen to receive promotional materials from us then we will use your personal information from time to time to inform you of our or one of our Affiliates fund development efforts or to inform you about products and/or services related to genetic aortic disorders that we think may be of interest to you. We may also disclose your name and mailing address to these Affiliates so that they can send you promotional materials directly. The personal health information and statistical information that you provide is used to create and maintain a database of aggregate information (data from which personal identifying information such as name and address has been removed) that will assist us in developing products, programs and services to better serve the genetic aortic disorder community coast to coast.

Protection and Retention of Personal Information

The Association makes all commercially reasonable efforts to ensure that personal information collected from you is protected against loss and unauthorized access. Access to your personal information is restricted to selected employees or representatives.

In addition, the Association employs generally accepted information security techniques such as firewalls, access control procedures and cryptography to protect personal information against loss and unauthorized access.

We retain your personal information for as long as necessary to fulfill the purpose(s) for which it was collected and to comply with applicable laws and your consent to such purpose(s) remains valid after termination of our relationship with you.

Access to Information and Complaints/Withdrawing Consent

You may contact the Association at the address below at any time to: (i) request access to or update or change your personal information; (ii) if you have any questions about this Privacy Statement; (iii) if you have reason to believe that we may have failed to adhere to this Privacy Policy; or (iv) to request that we remove you from our mailing list.

Send Mail To:

Attn: Executive Director

 The Genetic Aortic Disorder Association Canada

 Centre Plaza Postal Outlet

 128 Queen St. S., P.O. Box 42257

 Mississauga, ON L5M 4Z0

 Tel: (905) 826-3223 / 1-866-722-1722

Email: info@gadacanada.ca

Please call us or send an email if you no longer wish to receive information from or be contacted by the Association locally or nationally.