The personal data you entrust to us is crucial to our relationship with you. We are fully aware of its value and are committed to putting in place all the necessary safeguards to protect it. ALS Quebec uses this information mainly to inform you of our events, solicit your financial or volunteer contribution to our cause, inform you of our developments, thank you or recognize your contribution.

As an organization that works to raise funds for the healthcare sector, we collect, use and disclose information for the purpose of providing our services in soliciting contributions of various kinds, participating in events and informing you about the confidentiality is important to us. We adhere to the highest ethical standards when handling all information, especially personal information.

This Privacy Policy is intended to help you understand our practices regarding the collection, use, disclosure and retention of personal information. By providing us with personal information (through our Web site, by completing an event registration form, by e-mail, in person or by telephone), you consent to the processing of your personal information as described in this Privacy Policy, and you authorize Amyotrophic lateral sclerosis society of Quebec (ALS Quebec), its third parties and service providers to process your personal information for the purposes set out below.

This Privacy Policy does not apply to third-party Web sites that may be accessed through links on this Web site, and ALS Quebec is not responsible for such third-party Web sites. If you follow a link to a third-party Web site, that Web site will have its own privacy policies that you should review before submitting any personal information.


Founded in 1983, the Amyotrophic Lateral Sclerosis (ALS) Society of Quebec is a non-profit organization dedicated to the well-being of the ALS community in Quebec. Our mission and commitments to people affected by ALS in Quebec include:

  • Support them with a comprehensive range of services adapted to every stage of the disease.
  • Empower them to improve their current and future living conditions and environment.
  • Defend their rights with key political players
    and bring about change in their favor.
  • Raise public awareness and understanding of the disease, and mobilize the public to contribute to the cause.
  • Fund the most promising and relevant research projects likely to improve their living conditions and cure the disease.


We may collect and process various types of personal information in the course of our business and provision of services, including:

  • Professional and/or personal contact information, such as first name, last name, address(es), e-mail address(es), date of birth and telephone number(s);
  • Biographical information such as job title, employer, professional and/or personal background, photos and video or audio content;
  • Marketing information and communication preferences, as well as related information such as food preferences, comments and survey responses;
  • Information related to contribution history, participation in organization events, billing and financial information, such as a billing address, bank account information or payment data;
  • Service-related information, such as details of services we have provided to you;
  • Information about your professional background, networks, social involvement, professional affiliations and family ties;
  • Recruitment information, such as curriculum vitae, education and employment history, details of professional affiliations and other information relevant to potential recruitment by SLA Québec;
  • Website usage and other technical information, such as details about visits to our websites, your interaction with our advertising and online content, or information collected through cookies and other tracking technologies;
  • Information provided to us by or on behalf of our customers or generated by us in the course of providing our services, which may, where relevant, include special categories of personal information (such as racial or ethnic origin, political opinions, religious or philosophical beliefs, etc.);
  • Information such as your donation and community investment policy, your contributions, the recipient organizations and what, if anything, they are dedicated to, the recognition obtained, the decision-making process and the people involved in the organization and this process;
  • Any other personal information you provide. Please note that if you provide us with personal information about other persons (such as your customers, directors, officers, shareholders or beneficial owners), you must ensure that you have duly notified them that you are providing us with their information and that you have obtained their consent to such disclosure;
  • Where applicable, evidence of consent given to us (date, time, means), in circumstances where such consent is necessary for the processing of personal information;

We do not knowingly collect information from children or others under the age of 14. If you are a minor under the age of 14, please do not provide us with any personal information without the express consent of a parent or guardian. If you are a parent or guardian and you are aware that your children have provided us with personal information, please contact us. If we learn that we have collected personal information from minor children without verification of parental consent, we will take steps to delete that information from our servers.


We collect your personal information from you and during our interactions with you, as follows:

  • When you register for events, training courses and newsletters;
  • When registering for benefit events;
  • When you make a donation to our organization, whatever the form of your gift;
  • When you register as a volunteer for our organization;
  • In the course of the services we provide;
  • Through correspondence, e-mail or telephone.

We also collect publicly available information on public platforms, including our website.


 We may use personal information in any of the ways listed below, with your consent or, where applicable, under another legal basis. In each case, we indicate the purposes for which we use your personal information:

  • In order to provide our services and for the conduct of our business, to administer and perform our services, including fulfilling our obligations under any agreement between you and us.
  • In order to facilitate the use of our websites and to ensure that the content is relevant, and to ensure that the content of our websites is presented in the most effective manner for you and your device.
  • For marketing and business development purposes – to provide details of new services, information on developments in our organization and sector and invitations to seminars and events where an individual has opted to receive such information.
  • For research and development purposes (including security) – to carry out analyses to better understand our customers’ service and marketing requirements and to better understand our organization and develop our services and offers.
  • Recruitment purposes – to enable us to process job applications and assess whether an individual meets the requirements of the position for which he or she may apply to SLA Québec.
  • To meet our legal, regulatory or risk management obligations.
  • To prevent fraud and/or conduct other background checks that may be required at any time by applicable law, regulation and/or best practices (if false or inaccurate information is provided or fraud is detected or suspected, information may be forwarded to fraud prevention organizations and may be recorded by us or such organizations). When processing special categories of personal information, we may also rely on important public interests (crime prevention or detection) or legally founded claims;
  • To enforce our rights, to meet our legal or regulatory reporting obligations or to protect the rights of third parties.
  • To ensure we get paid – to collect payments owed to us and, where appropriate, to enforce such collections by debt collection agencies or other legal means (including legal proceedings).
  • In order to reorganize or change our organization – if we undertake a reorganization (for example, by merging, consolidating or divesting part of our organization’s mission), we may need to transfer some or all personal information to an applicable third party (or its advisors) as part of any due diligence process or transfer to such reorganized entity or third party for the same purposes as set out in this Privacy Policy or for the purposes of analyzing any proposed reorganization. In such a situation, we will take all possible steps to ensure the protection and security of personal information.


SLA Québec is a duly incorporated non-profit organization and is recognized as a charitable organization. Consequently, the personal information we collect may be transmitted to and processed by any entity in the SLA Québec network. We may also share personal information with certain third parties, including the following:

  • Third-party service providers and/or partners, including those who provide us with donation solicitation, database analysis, Web site, application development, hosting, maintenance and other services.
  • These third parties may access or process personal information in the course of providing services to us. We limit the information we provide to these service providers to that which is reasonably necessary for them to perform their functions, and our contracts with these service providers require them to maintain the confidentiality of such information;
  • Government authorities and law enforcement agencies where required by applicable law. More specifically, we may disclose personal and other information if we are required to do so by tax or other laws, or if we believe in good faith that such disclosure is necessary to comply with applicable laws, in response to a court order or subpoena or government search warrant, or otherwise to cooperate with such government authorities and law enforcement agencies;
  • The purchaser, successor or assignee in connection with any merger, acquisition, debt financing, asset sale or similar transaction, as well as in the event of insolvency, bankruptcy or receivership involving the transfer of personal information as a business asset to one or more third parties;
  • We will only use personal information for the primary purpose and the applicable legitimate purpose for which it was collected, or for purposes consistent with that primary purpose.

The organization uses the services of third-party sites, such as Facebook, LinkedIn, YouTube and Google, to promote its content and offers.

When you visit our website, these third parties may use cookies, web beacons or similar technologies on your hard disk to collect or receive information about your browsing on the website and elsewhere on the Internet. These technologies enable us to deliver relevant advertising targeted to your interests. You can consult cookies and delete them if you wish. You therefore have full control. Please refer to your browser settings to make the appropriate changes.

If you would like third-party sites to store cookies on your hard drive in order to offer you targeted advertising, you can activate this option.

For more information, please consult our Cookie Policy.


We will retain personal information only as long as necessary for the purposes set out in this Privacy Policy and to comply with our legal and regulatory obligations.

To find out more about how long we keep personal information, please contact us at the coordinates indicated in the “How to contact us” section.


We follow generally accepted industry standards to protect the information submitted to us, both at the time of transmission and once we have received it. We maintain appropriate physical, technical or administrative safeguards to protect personal information against accidental or unlawful destruction or accidental loss, alteration, unauthorized disclosure or access, misuse or other unlawful forms of processing of personal information in our possession. We have taken steps to ensure that the only employees who have access to your personal information are those who have a need to know or whose duties reasonably require them to know it.

However, no method of transmission over the Internet, nor any means of electronic storage, is 100% secure. We therefore cannot ensure or warrant the security of any information you transmit or provide to us, and you do so at your own risk. Nor can we guarantee that such information will not be accessed, obtained, disclosed, modified or destroyed as a result of a breach of our physical, technical or administrative safeguards. If you have reason to believe that your personal information has been compromised, please contact us as indicated in the “How to contact us” section. In the event of a privacy incident involving your personal information, we will notify you as soon as we become aware of the incident.  We will take reasonable steps to minimize the risk of harm and to prevent similar incidents in the future.


Under certain circumstances and in accordance with applicable data protection laws, an individual has the following rights:

  • Access: the right to ask whether we process information and, if so, to request access to personal information. Subject to applicable law and, where applicable, the payment of a monetary sum, the individual may thus receive a copy of the personal information we hold and certain other information concerning him or her;
  • Accuracy: We are required to take reasonable steps to ensure that personal information in our possession is accurate, complete, non-misleading and up-to-date;
  • Rectification: the right to request rectification of any incomplete or inaccurate personal information held by us.
  • De-indexing: the right to request that we stop disseminating their personal information or de-index any hyperlink attached to their name that gives access to information if such dissemination causes them harm or contravenes the law or a court order (right to erasure or oblivion).
  • Anonymization: the fact that our organization may, instead of destroying personal information, anonymize it and use it only for serious and legitimate purposes (e.g., keeping information required for tax inspection purposes).
  • The right to be informed when you are the subject of a decision based exclusively on automated processing;
  • The right to be informed when identification, location or profiling technology is used and of the means available to activate these functions;

Finally, it is also possible to lodge a complaint with a data protection supervisory authority, more specifically in the country, province or state in which you normally reside (in Quebec, the Commission d’accès à l’information), in which we are located or in which an alleged breach of data protection laws has occurred.

To exercise any of these rights, please contact us as indicated in the “How to contact us” section.


For detailed information about the cookies we use, please refer to our Cookie Policy below, which forms part of this Privacy Policy.


If you have any questions, comments or complaints about this Privacy Policy or your personal information, or if you wish to exercise your rights, file a complaint or obtain information about our policies and practices regarding our service providers outside Canada, please contact our Privacy Officer at the following coordinates

Susan Kennerknecht
President, Board of Directors 


We may change the content of our websites and the way we use cookies without notice, and therefore our Privacy Policy and Cookie Policy may change from time to time in the future. We therefore encourage you to review them each time you visit the website to stay informed about how we handle personal information.

This policy was last updated on 27-09-2023