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Down Syndrome Research Foundation Privacy Policy

The Down Syndrome Research Foundation (“DSRF”) respects your privacy and seeks to protect your personal information. The protection of personal information is subject to the provisions of the BC Personal Information Protection Act (“PIPA”), and may be subject to comparable provincial or federal privacy law in Canada.

This Privacy Policy explains how DSRF collects, uses and discloses the personal information that may be provided to DSRF in the course of DSRF completing its mandate.

“Personal Information” means information about an identifiable individual, but does not include the name, position, name or title, business telephone number, business address, business e-mail or business fax number of the individual. It also does not include the work product information of the individual.

This Privacy Policy outlines the principles and practices DSRF will follow in order to protect your personal information. DSRF will ensure the accuracy, confidentiality and security of your personal information, and as well will follow the legal requirements to allow you to request access to and correction of your personal information.

I. SCOPE

This Privacy Policy applies to DSRF. DSRF reserves the right to amend this Privacy Policy from time to time to ensure that it maintains current with changing laws and regulations.

This Privacy Policy does not impose any limits on the collection, use or disclosure of personal information that:

  • is covered by one of the exceptions in Sections 12, 15 and 18 of PIPA to collection, use and disclosure of personal information without consent;
  • was collected prior to January 1, 2004, where the personal information is used and disclosed in order to fulfill the same reasonable purposes for which it was collected;

This Privacy Policy does not apply to personal information if the Freedom of Information and Protection of Privacy Act applies or the federal Access to Information and Privacy Act applies to the personal information.

II. DEFINITIONS

DSRF” means the Down Syndrome Research Foundation.

collection” means the act of gathering, acquiring or obtaining personal information from any source, including third parties, by any means.

consent” means voluntary agreement to the collection, use or disclosure of personal information for reasonable purposes, which are made known to the individual. Consent can be express or implied. Express consent can be oral or given in writing, but is always unequivocal. Implied consent is consent that can be reasonably inferred from the action or inaction of an individual.

disclosure” means making personal information available outside DSRF.

use” means the treatment, handling, management and retention of personal information within DSRF.

personal information” means information about an identifiable individual excluding the individual’s contact information or their work product information.

contact information” means information to enable an individual, at a place of business, to be contacted and includes the name, position name or title, business telephone number, business address, business e-mail or business fax number of the individual.

work product information” means information prepared or collected by an individual or group of individuals as part of the individual’s or group’s responsibilities or activities related to the individual’s or group’s employment or business, but does not include personal information about an individual who did not prepare or collect the personal information.

III. ACCOUNTABILITY

DSRF is accountable for the protection of the personal information under its control and has designated as its Privacy Officer the Director, Finance & Administration.

IV. COLLECTING PERSONAL INFORMATION

Unless the purposes for collecting the personal information are obvious, and you voluntarily provide your personal information for that obvious purpose, we will communicate the purposes for which personal information is being collected, either orally or in writing, before or at the time of collection.

The mandate of DSRF is to empower individuals with Down syndrome to reach their full potential throughout life by pioneering and providing educational programs and services, grounded in foundational research. Working with researchers, professionals and families, DSRF is a bridge between research and practice.

DSRF relies on effective fundraising initiatives, grants and user fees to fulfill its’ mandate. During the course of carrying out its’ mandate, DSRF may collect your personal information. We will only collect your information by fair and lawful means and where it is necessary to, fulfill the following purposes:

  • to correspond with families, professionals, volunteers and donors
  • to gather information on students for effective program placement and monitoring, and research purposes
  • to run effective fundraising events and campaigns
  • to issue tax receipts where applicable
  • to review historical data on students, donations, donors, etc., in order to identify trends, gaps, revenue sources and improve operational efficiencies

V. CONSENT

DSRF will obtain consent to collect, use or disclose personal information except where as noted in this privacy policy, or where we are authorized or required to do so without consent.

Consent can be provided orally, in writing, or electronically, or it can be implied where the purpose for collecting, using or disclosing the personal information would be considered obvious to a reasonable person and you voluntarily provide your personal information for that purpose.

Consent may also be implied where you are given notice and a reasonable opportunity to opt out of your personal information being used or disclosed and you do not opt out.

Subject to the personal information being necessary to provide the service or product or where the withdrawal of consent would frustrate the performance of a legal obligation, you can withhold or withdraw your consent from DSRF to use your personal information for particular purposes. If you choose to withdraw your consent to the collection, use and disclosure of your personal information, DSRF will advise you of the consequences of the withdrawal.

VI. USING AND DISCLOSING PERSONAL INFORMATION

DSRF will only use or disclose personal information where it is necessary to fulfill the purposes for which it was collected, or for a purpose reasonably related to those purposes.

DSRF may disclose personal information where required or authorized by law, without your consent.

To the extent that we enter into contracts or other arrangements with third parties, which involve the transfer of personal information, we will ensure that the third party enters into appropriate covenants with us to provide the same level of protection over your personal information that DSRF provides.

In some cases, DSRF may seek your consent for the use and disclosure of your information after it has been collected, but before it is used or disclosed, for example, where DSRF wants to use your personal information for a purpose not previously identified to you.

DSRF does not, as a condition of supplying products or services to you, require you to consent to collection, use or disclosure of personal information beyond what is necessary to provide the product or service.

DSRF does not attempt to obtain consent for collecting, using or disclosing your personal information by providing false or misleading information regarding the purposes for the collection, use or disclosure of your personal information or by using deceptive or misleading practices. DSRF will not sell, rent or lease your personal information to third parties unless we have obtained your explicit consent to do so.

VII. RETAINING PERSONAL INFORMATION

If DSRF uses your personal information to make a decision that directly affects you, DSRF will retain that personal information for at least one year, so that you have a reasonable opportunity to request access to it.

Subject to the above, DSRF will retain your personal information only as long as necessary to fulfill the identified purposes, or to fulfill a legal or business purpose.

VIII. ENSURING ACCURACY OF PERSONAL INFORMATION

DSRF relies on the information provided by its stakeholders, and will make reasonable efforts to ensure that your personal information is accurate and complete. If there has been or will be any change to an individual’s or organization’s personal or corporate information then they should contact DSRF to provide updated information.

To the extent that you believe that the personal information you provided to DSRF may no longer be accurate or complete, you may advise DSRF to update its records. A request to update your personal information must be made in writing, by phone or email, and provide sufficient detail to identify the personal information and the correction being sought. Your request to update or correct your personal information should be forwarded to Director, Finance & Administration.

If you successfully demonstrate to DSRF that your personal information is inaccurate or incomplete, DSRF will correct the personal information as required.

IX. SECURING PERSONAL INFORMATION

DSRF has implemented security safeguards to protect personal information regardless of the format in which it is held, against loss or theft, unauthorized access, collection, use, disclosure, copying, modification or disposal or similar risks. DSRF uses safeguards which are appropriate to the sensitivity of the information.

DSRF uses the following security measures to ensure that your personal information is being appropriately protected:

1. Physical measures such as locked filing cabinets, drawers and offices, and restricted access to offices;

2. Organizational measures such as limiting access on a “need to know” basis and requiring service providers to provide comparable security measures; and

3. Technological measures such as the use of user id’s, passwords, encryption, and internet firewalls, and anti-virus software.

When disposing of or anonymizing personal information, DSRF will use appropriate security measures to ensure that your personal information is not inappropriately used.

DSRF will, on a regular basis, review and update security policies and controls as technology changes to ensure ongoing personal information security.

From time to time, your personal information may be disclosed outside of Canada, where it may be subject to the lawful access requirements of the jurisdiction.

X. PROVIDING ACCESS TO PERSONAL INFORMATION

You have a right to access the personal information that is held by DSRF. This right is subject to exceptions which are set out in PIPA.

In order to obtain access to your personal information, you must make a written request that provides sufficient detail to allow DSRF to identify the personal information being sought.

You may be required to provide sufficient personal information to identify yourself in order to enable DSRF to verify your identity before providing you with your personal information. You may also be asked more specific questions about the type and amount of personal information that you are seeking.

DSRF will make the information available within 30 working days. If DSRF is seeking an extension in order to respond to your request, DSRF will provide you with written notice of the extension.

In responding to your access request, DSRF will provide you with your personal information that is under its control, information about the ways in which the personal information has been and is being used by DSRF, and the names of the individuals and organizations to whom the personal information has been disclosed by DSRF.

If DSRF refuses in whole or in part to provide you access to your personal information, we will notify you in writing. The notification will include providing you the reasons for the refusal, in particular, the exceptions in PIPA upon which we are relying, and will advise you of any recourse which is available to you as a result of DSRF’s refusal.

XI. CHALLENGING COMPLIANCE: QUESTIONS AND COMPLAINTS

At any time you may seek information about DSRF’s privacy policies and practices by contacting DSRF’s privacy officer at Director, Finance & Administration.

If you have a question or a complaint about DSRF’s privacy practices, you should direct that complaint, concern or question in writing to the Privacy Officer designated under this Privacy Policy. DSRF has implemented an Inquiry/Complaint Handling Policy to receive and respond to your inquiry or concern or complaint about the policies and practices relating to the handling of your personal information.

If you provide a written complaint, concern or question to DSRF, DSRF will advise you of the complaint procedure. DSRF will also conduct a review into your concern or complaint. If DSRF concludes that a complaint is justified, DSRF will take appropriate measures which may include amending its policies and practices. DSRF will inform you of the outcome of its review regarding your question or complaint.

If you are not satisfied with the resolution proposed by DSRF, you will be advised as to the appropriate procedure to elevate your concern.

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Down Syndrome Research Foundation
1409 Sperling Avenue, Burnaby
British Columbia, Canada
V5B 4J8

Fax: +1 604 431 9248
Phone: +1 604 444 3773
E-mail: info@dsrf.org