Privacy Policy

Purpose

The purpose of this policy is:

• To ensure that the ALS Society of Canada (ALS Canada) identifies and complies with required legislation for the privacy and protection of personal information;
• To promote transparency of ALS Canada data practices and the measures we undertake to safeguard personal information;
• To provide clarity as to how ALS Canada collects and utilizes personal information; and
• To enable awareness for individuals on how to contact ALS Canada if they have questions, inquiries, or complaints.

ALS Canada is committed to protecting the privacy of the people we serve including clients and families, donors, stakeholders, volunteers, and employees. We value the trust placed in us by the public and recognize that maintaining this trust requires us to be transparent and accountable in how we treat the information that has been given to us.

Scope

This policy covers the handling of personal information collected by ALS Canada, including information or data (herein referenced as ‘information’) that is stored, processed, or otherwise shared with ALS Canada. It covers the use, disclosure, processing, storing, and deletion of personal information.

The Policy

ALS Canada is guided by internationally recognized privacy best practices and complies with relevant privacy laws. The Canadian Standards Association (CSA) Model Code has become recognized as a national standard for privacy protection and is upheld by ALS Canada as follows:

Accountability

ALS Canada is responsible for personal information in its custody and/or under its control and has designated a Privacy Officer who is accountable for our compliance with our privacy policy and all related privacy principles.

Identifying Purposes

Whenever ALS Canada collects personal information from an individual, we will explain the purposes and authority for the collection at the time of the collection, or as soon as is reasonably

Consent

ALS Canada obtains the individual’s consent for the collection of personal information. ALS Canada only collects personal information that has been provided voluntarily and with consent and will only collect personal information that is necessary. When an individual consents to the collection of personal information, an individual can only provide such consent if they are “capable”. If the individual is not “capable” a substitute decision maker who will make information decisions for them.

Even if consent has been provided, individuals may withdraw consent at any time, however such withdrawal of consent should be clearly communicated in written form. Individuals have the right to withhold consent. If an individual does not consent to the sharing of their information or an individual has withdrawn consent, it may impact our ability to provide resources or ongoing communication.

Permission to be contacted may be withdrawn at any time by contacting ALS Canada by telephone or in writing (see Contacts below) and providing the name, email address, or physical address used in the mailings.

Limiting Collections

ALS Canada limits its collection of personal information to that which is required for its business operations and services.

The types of personal information collected by ALS Canada includes, but is not limited to:

• People affected by ALS: When providing services to a person affected by ALS, we collect that person’s name, contact information, and certain medical information. We may also collect additional family members personal information where applicable. This information is used to provide services including in-person home visits, virtual visits using technology, to connect with the health care teams, or to coordinate equipment requirements with third-party providers.
• Donors: Donors provide their name, address, phone number, email and credit card or bank information to process online donations and request a tax receipt.
• Website Visitors: We collect data on visitors to our website to track and provide analytics of usage and to enhance the user experience. This information does not identify a specific user.
• Volunteers: Volunteers provide their name, address, phone number, email, and date of birth. Senior volunteers such as Board members may provide identification for the purposes of background checks.

Limiting Use, Disclosure & Retention

ALS Canada uses personal information only for the purpose for which it was collected or compiled; for a consistent purpose; with the written consent of the individual; or for the purpose for which the information was disclosed to ALS Canada. Employees use the minimum amount of personal information needed. Authorized disclosures are limited to the minimum amount necessary. ALS Canada will only maintain personal information for the time it is required to utilize the personal information or to adhere to legislative requirements. Once the retention period expires, the individual’s personal information will be securely deleted.

ALS Canada may share personal information with a third-party:

• to facilitate the provision of services including client services, such as health care teams when facilitating services or the provision of equipment;
  related to direct response fundraising and for the processing of donations and credit card transactions;
• to exchange names and mailing address information with other charitable organizations on specific occasions through an exchange list brokerage. This only applies to active donors who donate through our direct mail program. Any donors who wish to have their name removed from our trade list can do so at any time upon request; and
• to send periodic mailings with information about new programs and services, requests for support, information resources, fundraising opportunities, or upcoming events, where consent and contact information has been provided.

Accuracy

ALS Canada makes every reasonable effort to ensure that the personal information it collects, uses and discloses is accurate and complete. When direct collection is not feasible or appropriate, ALS Canada makes every reasonable effort to ensure the accuracy of personal information collected from third parties.

Safeguards & Security

ALS Canada ensures that personal information in its custody is secured in a manner appropriate to the sensitivity of the information. ALS Canada ensures that records containing personal information are protected from unauthorized collection, access, use, disclosure, and disposal by putting in place reasonable administrative, physical, and technical security measures. All employees ensure that personal information that they handle as part of their job is secure from unauthorized access, that collection, use, and disclosure of personal information is minimized, and that records are managed in accordance with an established records retention and disposal system.

Safeguards include:

• All personal information collected by ALS Canada is kept confidential and secure;
• ALS Canada uses Secure Socket Layer (SSL) encryption technology to ensure the integrity and privacy of the personal and credit card information provided online, and implements safeguards for financial information provided by mail, phone, or in person;
• ALS Canada maintains records of all contributions to the Society. All information is kept private and confidential and is stored in a secure location accessible only by authorized employees; and
  Electronic records are stored in a secure hosted, cloud environment in Canada and protected with secure access. Computers and phones with data access are password protected.

Openness & Transparency

ALS Canada ‘s Privacy Policy is available on ALS Canada ‘s website. Printed copies are available from ALS Canada’s Privacy Officer upon request, who responds to any related questions. It is important, ethically, and legally, to provide reasonable transparency to individuals in respect to the processing and handling of their personal data. ALS Canada maintains an up-to-date privacy policy (i.e., privacy notice) that is made available to all clients and users of the ALS Canada website and services. It is imperative that employees and contractors read this privacy notice. In the event that errors or concerns are discovered, findings must be shared with the Privacy Officer.

Individual Access

An individual may access his or her personal information by making a request to the ALS Canada Privacy Officer. Access requests are responded within a reasonable timeframe (no longer than 30 days) and at a nominal or no cost to the requester in accordance with privacy laws. Any person whose personal information is held by ALS Canada has the right to know of the existence of such personal information and to have access to that information to ensure that it is accurate and the right to complain if that personal information is improperly collected, used, stored, or disclosed.

Challenging Compliance

Complaints or questions with respect to ALS Canada’s compliance with this Privacy Policy may be made to ALS Canada’s Privacy Officer. ALS Canada’s Privacy Policy will continue to evolve over time to reflect current best practices in privacy protection, legislative amendments, and as ALS Canada’s responsibilities evolve.

Changes To This Policy

ALS Canada may update this Privacy Policy from time to time to reflect, for example, changes to our practices or for other operational, legal, or regulatory reasons. Individuals are encouraged to refer to this Privacy Policy often for the latest information about our privacy and security practices.

Contact

If you have you any questions about our privacy practices, would like to access or change the personal information we have collected about you, or would like to make a complaint, contact:

Privacy Officer
ALS Society of Canada
180 Bloor Street West, Suite 500
Toronto, ON M5S 2V6
1-800-267-4ALS (4257)

ALS Canada will provide acknowledgement of receipt of your inquiry/concern, and will provide either a full response, or with a reason for a further extension, within 30 calendar days.