Privacy Policy

This Privacy Policy governs the website located at Rare Patient Voice refers to Rare Patient Voice Canada Inc.

Our Privacy Pledge

We collect personal information from our panel members in the regular course of doing business. This policy lets you know exactly how we’re protecting the information you entrust to us.

When you participate as a panel member, your privacy is assured.

We will not make any personal information of our panel members available to anyone without your knowledge (as described in this policy), except in the rare instances required by law. This includes your name, address, phone number, and email address.

We will never try to sell you anything – that is not our business. We are not telemarketers or direct marketers. We are market researchers interested only in your opinions. We will never sell your name to anyone else who might want to sell you anything.

Occasionally, we may contact you to validate responses. We will never misrepresent ourselves or what we are doing.

Your individual responses to surveys and other market research activities (“studies”) will also be kept confidential and will never be linked to your personal identifying information.

Your decisions about participating in a study, responding to specific questions, or discontinuing participation will be respected without question.

1. Information Collected on this Website

When you register as an interactive panel member, we collect the following personal identifying information: your name, address, postal code, phone number, and e-mail address.

Patients and caregivers who sign up at this site ( will be provided with opportunities to participate in marketing research where they can express opinions and attitudes about medical conditions they are affected by. This research typically involves people from around the world, and everyone’s responses are aggregated and anonymized (stripped of any personally identifiable information) before the results are shared with clients. In addition, certain study findings might be published on our websites (in anonymous form) so that our members can be among the first to hear about the concerns and interests of people around the world.

We use your name and email address to let you know about opportunities to participate in studies and to provide new updates about Rare Patient Voice that may be of interest to our panel members. Generally, panel members are notified about an opportunity to take a study several times per year. We also send brief emails to our panel members several times a year to provide information of interest and to express our appreciation for their participation.

We use postal service addresses to mail cash payments to members who have completed surveys or other activities.

We use phone numbers to return calls to answer a question or address any concerns.

We sometimes call panelists to validate survey responses. If a member has agreed to participate in a telephone interview, we use the phone number volunteered by the member for the call.

2. Information Collected in Studies

Rare Patient Voice frequently asks panel members for demographic information (such as age, gender, household composition), computer and web access capabilities, and health information (for example, health conditions they have and treatments used). Rare Patient Voice uses this information to select studies that are appropriate for the panel member.

Rare Patient Voice asks panel members for their opinions about a variety of products and services by asking them to complete online surveys or market research interviews. Usually, Rare Patient Voice combines the individual panelist responses and reports on the aggregated (or group) results. Individual level responses are occasionally used, but never associated with any personal identifying information.

Rare Patient Voice may occasionally ask for other personal identifying information as part of a specific study. In these cases, we will provide an explanation in the study introduction to allow members to make an informed decision about participation. The explanation will include a description of any new identifying information that will be collected via the study and with whom it will be shared. As with any study, members can decline to take the study or stop at any time during the study process. Like all other information we collect, any additional information collected for a specific study will be used for research purposes only.

Rare Patient Voice also automatically collects information via log files to administer the site and to aid in technical problem solving. Log file information collected is IP address, time a page was viewed, name of pages viewed within the Rare Patient Voice site during the specific visit, browser type, operating system type, URL parameters, and cookies that were set by the Rare Patient Voice website at the time of the visit. Log files may also include information indicating where a visitor came from. This information is used only to administer the site and to identify and resolve any technical problems related to the site’s operation. Log file information is never linked to personal identifying information.

By registering on the site, you agree to receive emails from us, such as study invitations and reminders, responses to inquiries that you submitted on our site, and inquiries regarding your status as an Rare Patient Voice member. If we send you a study invitation or reminder by email, we will always provide the opportunity to opt-out of receiving future emails by following the “unsubscribe” instructions at the bottom of the email.

3. How We Use the Information You Provide

If you have registered on the site or signed up at a patient event by filling out a sign-up form, we will use the information you provide us primarily to contact you about market research studies in which we would like you to participate, or to provide you with the results of the studies. We may also use your personal information to:

send you a gift card via email for signing up or for referring others who sign up

notify you about new features on our websites, or other products or services in which we think you may be interested;

update our internal database of individuals willing to take part in research and surveys;

determine which individuals registered with Rare Patient Voice should be invited to participate in any study;

provide you with information about incentives for responding to our study requests;

process your answers to surveys and summarize the results;

conduct research studies on behalf of third parties;

transfer your study responses to service suppliers who process study results on our behalf and under our direction;

provide a unique, non-personally identifiable ID (not associated with you) to our research partners so they may conduct studies on our behalf and report the findings to us;

to provide you with information relating to rewards provided by any third parties, including but not limited to a reward provided in response to your participation in studies;

contact you by email to invite you to take part in studies; and/or

invite you to enter a sweepstakes or participate in other incentive programs as a reward for participating in our studies;

comply with applicable laws and regulations; and respond to your inquiries about Rare Patient Voice or its website.

We may use a third party agent to host surveys or panel events to collect Personal Information, including email address. That information is delivered to Rare Patient Voice directly. Contractual agreements between Rare Patient Voice and third party vendors ensure that your Personal Information will not be shared with anyone and will not be used for any other purpose without your consent.

Rare Patient Voice will give notice when Personal Information is collected or when any collected information is later to be provided to third parties. All notices will explain the need for the information and describe how the information will be used. Personal Information will not be used to directly market any products or services to identifiable persons unless that possibility has been disclosed in advance and the opportunity not to participate has been given.

4. Email Communications from Rare Patient Voice

Rare Patient Voice does not send unsolicited commercial emails. Nevertheless, Rare Patient Voice voluntarily complies with Canada’s Anti-Spam Legislation (CASL), ensuring that we:

obtain your consent to contact you through e-mail;

provide clear identification of our organization when we contact you;

including a phone number or e-mail address for Rare Patient Voice; and

providing a clear and simple method to unsubscribe from future e-mails

5. Study Results

Rare Patient Voice conducts studies on behalf of its clients. Rare Patient Voice clients include Canadian-based businesses, as well as research organizations based in other jurisdictions who wish to survey people in Canada.

Clients list the general demographic information (such as age range and health condition) of individuals from whom they wish to ask survey questions. Based on the client’s needs, Rare Patient Voice contacts individuals who have registered on the site and invites them to participate in studies such as online surveys, telephone or in-person interviews, online bulletin boards, etc. Answers to the surveys are associated with unique, but non-personally identifiable ID numbers in Rare Patient Voice databases.

6. Sharing Your Personal Information

We will not make any personal information of our panel members available to anyone without your knowledge (as described in this policy), except in the rare instances required by law. This includes your name, address, phone number, and email address. If Rare Patient Voice acquires or spins off all or part of its business, or in the event of a bankruptcy proceeding, it might convey its business assets, including survey participant data. If a change of ownership occurs, a notice will be posted here, so please check this policy regularly.

7. Changing the Personal Information You’ve Provided

If you provided personal information during registration or in response to a survey, you may change or modify such information by sending an email to [email protected]

8. Consent

When you provide us with personal information to sign up with Rare Patient Voice, determine if you are qualified to participate in a marketing research study, receive your incentive for participating, we assume you consent to our collecting it and using it for that specific reason only.

9. Opt Out Policy

Panel members may decline to respond to a survey or opt to drop panel membership at any time. We respect the decision to decline participation and will not try to dissuade you. Panelists who prefer not to complete a given survey need not do so. If you choose to stop participating in our research surveys, you may unsubscribe from our survey invitations at any time by following the unsubscribe directions included on every email sent to our members. Please be aware that even if you unsubscribe, we may maintain certain information in your registration profile for up to six (6) years for ordinary business purposes, such as reporting the aggregate number of registrations and cancellations to our non-affiliated partners. We will however remove any health or demographic information.

10. Safety and Security

We use a variety of physical, administrative and technical measures to secure the data stored on our servers, including limiting physical access to our central data servers. Our policy is to allow only authorized personnel to access the physical areas where such servers are located. In addition, we use firewalls to protect the servers from outside intrusion. Please be aware, however, that no security measures are guaranteed to protect against unauthorized access.

Your Personal Information may be collected, stored, processed, used and transferred by one or more Rare Patient Voice affiliated companies or non-affiliated service providers in one or more countries outside your originating country.

Please note that information submitted on the site or otherwise sent to Rare Patient Voice over the Internet may be transferred outside of Canada, the United States and outside of the European Economic Area (EEA), where data protection laws are not as strong as within these areas. If you have any concerns in relation to such transfers, you should not use the Internet as a means of communication with Rare Patient Voice.

11. Children’s Privacy

Rare Patient Voice believes that it’s especially important to protect children’s privacy online and encourages parents and guardians to spend time online with their children to participate and monitor their Internet activity. Rare Patient Voice does not seek to collect any personal information from children under 16 years of age. During the profile registration process, we collect birth date, and if an individual enters a birth date that indicates the individual is under 16, we block the registration and any personal information submitted by the individual is not saved in our database. From time to time, we may ask our adult survey respondents whether they have children residing with them who might have certain conditions. In such event, we do not ask the child or parent to submit personally identifiable information about the child.

If you would like to contact us about your information, any information about your child, or to find out how you can have your child’s information removed from our database, please contact Peter Ziedins at [email protected]

12. Cookies

Rare Patient Voice uses cookies on our registration and survey forms during the time you are actively completing the forms. These cookies (which may be flash-based cookies or local shared objects) are used solely for technical purposes to allow for accurate transmission of survey information to the Rare Patient Voice database and to ensure that a member does not take the same survey more than once. For longer surveys, we use cookies to make form completion more convenient for the panelist. They allow for completion of the form in more than one sitting; you take up where you left off rather than starting from the beginning again. No personal identifying information is stored on any cookie nor do we retain any cookie information on our databases.

By deleting this cookie you will still be able to participate in surveys. However you will reduce your chances of receiving more tailored surveys and as a result lower your reward earning opportunities.

If you do not want to receive the Cookies, please click on the following link for instructions on how you can delete it from your computer.

13. Other Websites

The Site contains links to other websites. Rare Patient Voice is not responsible for the privacy policies and practices or the content of any websites which are linked to the Site.

14. Changes to this Policy

Please check this page periodically for changes as Rare Patient Voice reserves the right, at its discretion, to change, modify, add, or remove portions of the Privacy Policy and the Site at any time. Your continued use of the Site following the posting of any changes to this Policy will mean that you accept such changes.

If we are going to use personally identifiable information in a manner materially different from that stated at the time of collection, we will notify the affected individuals by posting a notice on the site or via email.

15. How to Contact Us

If you have any queries relating to this Statement, or how your information is being used, please feel free to contact us by letter at the following address: Rare Patient Voice, 72 Main Street, Mount Albert, ON, L0G 1M0, Canada, by telephone at 289-275-2330 or by email to [email protected]. Only information collected by Cookies as specified in this section of our privacy policy is automatically collected from Rare Patient Voice Panel Members. In the event that we do collect any personal data about visitors to the Site it is available only to Rare Patient Voice.

16. Effective Date

This privacy policy is in effect as of May 19, 2016.