Your Personal Information and Privacy
Donors, Volunteers and Event Participants
The Huntington Society of Canada has assigned an individual as the Chief Information Officer and has privacy policies and procedures in place.
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.
The information the Society 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.
Limiting use, disclosure and retention
HSC uses your personal information to process donations, to respond to your requests for services and information, to keep you informed about HSC activities, and for fundraising.
HSC shares your personal information only with employees and/or volunteers who require such information to establish, manage and maintain our relationship with you. We may also disclose your personal information to third party service providers whom we engage to fundraise. These third party providers only have access to personal information that is needed to perform their services and may not use it for any other purpose. They are bound by agreements that obligate them to protect your personal information.
There are circumstances where the use and/or disclosure of personal information is justified or permitted without consent. Generally this will occur when we are required by law or by order or requirement of a court.
Fundraising helps to ensure the on-going stability and quality of the services and programs the Huntington Society of Canada provides. On occasion, we exchange our mailing list with other registered Canadian charities so that we can find new supporters and spread the word about HD. If you do not wish to participate please contact us at 1-800-998-7398 or by email at email@example.com
HSC retains your personal information for as long as required by law, professional standard or as required to maintain our programs and activities.
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.
All means possible are used to protect and guard personal information on file with the Huntington Society of Canada. Access to information is limited to those with a “need to know”, all employees and volunteers in the employ of Huntington Society of Canada are trained on the issue of privacy – its meaning and importance, and as well, all files whether “soft” (meaning electronic) or “hard” (meaning paper) are maintained in filing cabinets in secure locations. Firewalls, anti-virus, strong passwords and software solutions for technical security are additional ways your information is protected.
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.
In order to access your any personal information we may have on you, please send your written request to the Huntington Society of Canada at:
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.
The goals of the program are to:
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.
Right of Privacy
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.
The Privacy Act
There are Provincial and Federal legislation that provides guidelines and requirements for ensuring the protection of personal information. Please consult the HSC Chief Information Officer to discuss your questions or concerns regarding your personal information and privacy at 1-800-998-7398 or firstname.lastname@example.org.
Your right to know how we collect your information
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.
To know how we use your information
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.
Our Privacy Principles
The Huntington Society of Canada believes in the basic right of individuals to their privacy. We use 10 internationally accepted principles to guide us in safeguarding personal health information.
Our Refund Policy
The Huntington Society of Canada will provide refunds on a case-by-case basis. Please contact us at email@example.com or give us a call at 1-800-998-7398.
Charitable Registration Number: 11896 5516 RR0001