Last updated May 1, 2026
HSC only collects personally identifying information about donors, volunteers and event participants for fundraising, public education and advocacy purposes, program and service delivery, as well as to establish, maintain and manage our relationship with you.
By providing personal information to HSC, you consent to our collection, use, and disclosure of your information as described in this policy, except where otherwise permitted or required by law.
We may share personal information with trusted third-party service providers who support our operations. These may include:
These service providers are required to protect your personal information and use it only for the purposes for which it was shared.
While we make reasonable efforts to store personal information in Canada, we may use third-party service providers, including cloud-based services, to store and process personal information on our behalf. Some of these service providers may be located outside of Canada.
As a result, personal information may be transferred to, stored, or accessed in jurisdictions outside of Canada and may be subject to the laws of those jurisdictions, including access by courts, law enforcement, and national security authorities.
We take reasonable steps to ensure that personal information is protected and handled in accordance with applicable privacy laws and this policy, including when it is processed by third-party service providers.
The Huntington Society of Canada does not sell its donor or mailing lists.
We do not currently rent, exchange, or otherwise share donor lists with other organizations. If this practice were to change in the future, we would do so only in accordance with applicable laws and in compliance with the Canadian Marketing Association Code of Ethics and Standards of Practice.
In all cases, we honour donors’ requests to limit or exclude the use of their personal information for communications or fundraising purposes. Individuals may contact us using the information provided below to update their preferences.
The information HSC collects is the minimum amount we need to establish and maintain a service, volunteer, participant, donor or program relationship with you. This includes but is not limited to
We may be required by law to collect certain information about you. For example, some of the information that HSC collects is needed in order to satisfy the requirements of the Canada Revenue Agency (CRA) (e.g. processing income tax receipts). HSC generally collects your personal information directly from you and only with your consent. However, if the individual who has a relationship with HSC is a minor, information may be collected from a parent or legal guardian. If your personal information will be used or disclosed for any additional purposes that are not outlined in this policy, HSC will advise you of these new purposes before such use or disclosure.
HSC uses your personal information to process donations, respond to your requests for services and information, communicate with you about our activities, and support our fundraising efforts.
Access to personal information is limited to employees, volunteers, and authorized service providers who require it to fulfill their responsibilities. Any third-party service providers are required to protect personal information and use it only for the purposes for which it was shared.
We may use or disclose personal information without consent where permitted or required by law, including in response to legal or regulatory requirements.
HSC retains personal information only as long as necessary to fulfill the purposes for which it was collected and to meet legal and regulatory requirements.
HSC aims to ensure that any personal information provided is accurate, complete and current as required for the purposes for which the information is used.
We use a combination of physical, administrative, and technical safeguards to protect personal information against loss, theft, unauthorized access, disclosure, copying, use, or modification.
These safeguards are appropriate to the sensitivity of the information and may include secure storage, access controls, and secure technologies. Access to personal information is restricted to authorized individuals who require it for their role.
The Huntington Society of Canada will readily make available to individuals the policies and procedures that support our commitment to privacy.
At any time, you are entitled to view your personal information on file with the Huntington Society of Canada. You may also request corrections to your personal information if you believe it is inaccurate or incomplete.
To request access to any personal information we may hold about you, please submit a written request to the Huntington Society of Canada at:
375 Hagey Blvd, Unit 114
Waterloo, ON N2L 6R5
The Huntington Society of Canada is open to discussing our privacy policy with you at any time. Should you be concerned that we are not complying with our stated Privacy Policy, please contact us at 1-800-998-7398 or by email at info@huntingtonsociety.ca
The following applies specifically to personal information collected through our Family Services Program:
The Huntington Society of Canada is a national network of professionals and volunteers working to improve the quality of life for people with Huntington disease (HD) and their families, and to find new reliable treatments for HD.
The Family Services Program has been established to provide direct support to individuals and families who live with HD. As HD is a genetically inherited disease clients are individuals with HD and family members, in addition to the community at large. Family Services within HSC strive to address the client’s bio-psychosocial status, as well as the social system within which they live. This is accomplished by maintaining a “therapeutic” relationship with the client, linking with other professionals, developing supports and services in community and providing ongoing education.
To accomplish these goals, the employees within the Family Services Program will need to collect personal information that will help us to better serve you. Personal information includes information such as name, address, telephone number, gender, as well as health care needs and supports required.
Confidential means that health information that is confided by a patient is to be kept secret and not disclosed or made accessible to others unless authorized by patient consent. A breach of confidentiality occurs whenever a health professional discloses or makes health information available to others without or inconsistent with the patient’s consent.
There are limits to confidentiality.
Includes a patient’s right to determine with whom he or she will share information and to know of and exercise control over use, disclosure and access concerning any information collected about him or her; it entails the right of consent. Nonconsensual collection, use, disclosure or access violates the right of privacy, even if it is justified.
Canadian federal and provincial privacy laws provide guidelines for the protection of personal information. Please consult HSC’s designated privacy officer to discuss your questions or concerns regarding your personal information and privacy at 1-800-998-7398 or info@huntingtonsociety.ca
The knowledge and consent of the individual are required for the collection, use or disclosure of personal information, except where defined by law, Huntington Society of Canada will identify the purposes for which it collects personal information and will obtain consent prior to the time the information is collected.
The Huntington Society of Canada collects, uses and shares, with other health care providers involved in your care, personal and health information for the provision of in-home health and support services, in-school support services, and to facilitate placement in a long-term care home.
When you visit our website, we may automatically collect certain information about your device and browsing activity using cookies and similar technologies (such as pixels and analytics tools). This may include:
We use this information to enhance your experience, understand how our website is used, and support our communications and fundraising efforts.
Cookies are small text files stored on your device. Some cookies are necessary for the website to function properly, while others help us analyze website usage and improve performance.
You can adjust your browser settings to refuse cookies or alert you when cookies are being used. Please note that some features of our website may not function properly if cookies are disabled.
We may use third-party services, including Google Analytics, to help us understand how visitors use our website. These services collect information such as pages visited, time spent on the site, links clicked, and general geographic location (based on IP address).
This information is used in an aggregated and, where possible, anonymized manner to improve our website, enhance user experience, and support our communications and outreach efforts.
We may also use tracking technologies provided by Meta Platforms (such as the Meta Pixel) to measure the effectiveness of our communications and advertising, and to better understand how users interact with our website. This may allow us to deliver more relevant content and fundraising messages through platforms such as Facebook and Instagram.
Google Analytics may use cookies and similar technologies to collect and analyze this information. Data collected through these third-party tools, including Google Analytics and Meta, may be transmitted to and stored on servers outside of Canada, including in the United States, and may be subject to the laws of those jurisdictions.
You can learn more about how Google collects and processes data, and how you can control your information, by visiting:
You can also opt out of Google Analytics tracking by using the Google Analytics Opt-out Browser Add-on:
By continuing to use our website, you consent to the use of cookies and similar technologies as described in this policy.
The Huntington Society of Canada will provide refunds on a case-by-case basis. Please contact us at events@huntingtonsociety.ca or give us a call at 1-800-998-7398.
If you have questions about this policy or wish to access or update your personal information, please contact:
Huntington Society of Canada
375 Hagey Blvd, Unit 114
Waterloo, ON N2L 6R5
1-800-998-7398
info@huntingtonsociety.ca
www.huntingtonsociety.ca
Charitable Registration Number: 11896 5516 RR0001
We may update this privacy policy from time to time to reflect changes in our practices or legal requirements.
The updated version will be posted on our website with a revised “last updated” date.
