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Privacy and Refund Policy

Your Personal Information and Privacy

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.


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

 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. Identifying Purposes: 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: The Huntington Society of Canada has a process for individuals, upon request, to access their personal information, and to challenge its accuracy.
  10. Challenging Compliance: An individual may challenge compliance to these principles through the Chief Information Officer at the HSC

Our Refund Policy

The Huntington Society of Canada will provide refunds on a case-by-case basis. Please contact us at or give us a call at 1-800-998-7398.

National Office

The staff at the Huntington Society of Canada’s office, located in Kitchener, ON, can provide you with information about HD and put you in touch with your nearest Chapter or support staff across Canada. We can also refer you to the closest clinic offering genetic counselling and testing.

Contact Us

To find out how we can help, please contact us at:

Huntington Society of Canada
151 Frederick St., Suite 400
Kitchener, ON N2H 2M2

Charitable Registration Number: 11896 5516 RR0001

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