Privacy Policy

Donors, Volunteers and Event Participants

Accountability

The Huntington Society of Canada has assigned an individual as the Chief Information Officer and has privacy policies and procedures in place.

Purpose

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.

Consent

When you provide information to HSC you agree and consent that we may collect, use and disclose your personal information in accordance with this privacy policy.

Limiting Collection

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:

• contact and identification information, such as your name, address, telephone number and e-mail address
• donation information such as date of gift, amount of gift, the campaign you contributed to, name of spouse or partner if it was a joint gift
• financial information such as your payment methods and preferences, billing and banking information (credit card number and expiry date or chequing account transit numbers, in order to process your donation); for online financial transactions such as donations and event registrations, we process standard credit card information (card number, card type and expiration date) via a secure, 128-bit encrypted Secure Sockets Layer (SSL) session. SSL is the proven standard for secure web transactions.  All online transactions are processed by an accredited third-party vender, who meets all of the required online security requirements.

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 info@huntingtonsociety.ca

HSC retains your personal information for as long as required by law, professional standard or as required to maintain our programs and activities.

Accuracy

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.

Safeguards

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.

Openness

The Huntington Society of Canada will readily make available to individuals the policies and procedures that support our commitment to privacy.

Individual Access

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:
20 Erb St. W.,
Suite 801
Waterloo, ON N2L 1T2

Challenging Compliance

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

Family Services

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:

1. Enable individuals and families to adjust emotionally and practically by supplying information and helping them to manage the present and prepare for the future.
2. Help people identify and understand the family’s need for specific services and enable them to gain access to these services on a timely basis – and then follow up to ensure the client’s needs are met.
3. Create mutual support systems for individuals and families to lessen isolation and to learn from personal experience.
4. Ensure HD families receive a continuum of services by advocating for the development of new services designed to meet the needs of individuals and families. Also, ensure existing services are tailored to include families living with HD and to serve them well.
5. Support and educate service providers to better serve individual and families living with HD.

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.

Confidentiality

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.

1. Child Protection – When a staff becomes aware of harm, or potential harm to a child, we are required by law to report this to the local children’s services as indicated by provincial legislation.
2. Harm to Self – Professional Codes of Ethics and Standards of Practice which govern staff in the Family Services Program mean that it may not be possible to maintain confidentiality when we become aware of an individual who is intending to do harm to self.
3. Harm to Others – Professional Codes of Ethics and Standards of Practice which govern staff in the Family Services Program mean that we cannot ensure confidentiality in situations when we learn of harm or potential harm to another adult.
4. Testimony in Court – There may be times when staff of the Individual and Family Services

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 info@huntingonsociety.ca.

Your Rights

• You have the right to access your information.
• You have the right to access the personal health information contained in your record.
• You have the right to have this information corrected in your record.
• You have the right to change or remove your consent.
• You have the right to voice your concerns. If you believe any of your privacy rights have been violated in any way and the Chief Information Officer cannot resolve your concerns, you may contact the responsible Provincial authority for Information and Privacy.

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.

1. Accountability: The Huntington Society of Canada has assigned an individual as the Chief Information Officer and has privacy policies and procedures in place.
2. Purpose: The Huntington Society of Canada ensures that individuals know the purpose for which personal information is required prior to collection, use or disclosure of the information.
3. Consent: Informed consent is obtained prior to the collection, use or disclosure of information.
4. Limiting Collection: The collection of personal information shall be limited to that which is necessary for the purposes identified by the Huntington Society of Canada. Information shall be collected by fair and lawful means.
5. Limiting use, disclosure and retention: Personal information shall not be used or disclosed other than those purposes for which it was collected without the consent of the individual or as required by law. Personal information shall be retained only as long as necessary for the purpose.
6. Accuracy: The Huntington Society of Canada will ensure that personal information is as accurate, complete and up-to-date as is necessary for the purposes for which it is to be used. Individuals have the right to have inaccurate information corrected.
7. Safeguards: Appropriate security controls for technology and staff are in place and maintained to ensure there is no unauthorized use or disclosure of personal information.
8. Openness: The Huntington Society of Canada will readily make available to individuals the policies and procedures that support our commitment to privacy.
9. Individual Access: 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:
   20 Erb St. W.,
   Suite 801
   Waterloo, ON N2L 1T2
10. Challenging Compliance: 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