Privacy Policy

This Privacy Policy governs the website located at rarepatientvoice.com.

Our Privacy Pledge

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 will never sell your name or personal information to anyone else.
• Occasionally, we may contact you to validate responses. We will never misrepresent ourselves or what we are doing.
•  Your individual responses to surveys 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

This site (www.rarepatientvoice.com) provides survey respondents with the opportunity to express opinions and attitudes about the most current issues. We conduct research that involves people from around the world, and we aggregate and anonymize such research (stripped of any personally identifiable information) before sending research results to our clients. In addition, certain survey findings might be published on our websites (in anonymous form) so that our respondents can be among the first to hear about the concerns and interests of people around the world.

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

We use your name and email address to let you know about opportunities to take surveys and to provide new updates about Rare Patient Voice that may be of interest to our panelists. Generally, panel members are notified about an opportunity to take a survey 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.

We use phone numbers to return calls to answer a question or address any concerns. On rare occasions, we 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 Surveys

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 surveys 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 surveys via email. 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 survey. In these cases, we will provide an explanation in the survey 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 survey and with whom it will be shared. As with any survey, members can decline to take the survey or stop at any time during the survey process. Like all other information we collect, any additional information collected for a specific survey will be used for research purposes only. In most cases, this information will be first name and telephone number so that you can be contacted for a telephone or webcam interview. Sometimes your email is included to schedule the interview. Our partners sign a legal agreement that they will only use this information for those specific purposes.

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, 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 www.rarepatientvoice.com site, you agree to receive emails from us, such as other survey 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 survey 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 www.rarepatientvoice.com 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 surveys in which we would like you to participate, or to provide you with the results of the surveys. 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 our surveys;
• provide you with information about incentives for responding to our survey requests;
• process your answers to surveys and summarize the results;
• conduct research surveys on behalf of third parties;
• transfer your survey responses to service suppliers who process survey 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 surveys 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 surveys;
• contact you by email to invite you to take part in surveys and offline focus groups; and/or
• invite you to enter a sweepstakes or participate in other incentive programs as a reward for participating in our surveys;
• comply with applicable laws and regulations; and respond to your inquiries about Rare Patient Voice or its website.

4. Email Communications from Rare Patient Voice

Rare Patient Voice does not send unsolicited commercial emails. Nevertheless, Rare Patient Voice voluntarily complies with the key privacy and disclosure provisions of the U.S. CAN-SPAM Act, including:

• providing truthful sender information;
• including a physical address for Rare Patient Voice or the Rare Patient Voice affiliate sending the email message; and
• providing a clear and simple opt-out method which is honored within ten (10) business days after the opt-out request is made.

In addition, all survey invitations sent via email are consistent with the CASRO Code of Standards and Ethics for Survey Research.

5. Survey Results

Rare Patient Voice conducts surveys on behalf of its clients. Rare Patient Voice clients include U.S.-based businesses, as well as research organizations based in other jurisdictions who wish to survey people in the U.S. or elsewhere. Surveys may be programmed or hosted by third parties, who may collect the survey data (although not your personally identifiable information).

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 an online survey. 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.

When we pay you by check for participating in a survey, we provide your name and address to Incheck, our check processing company, so that they can send the check directly to you. They use this information only for this specific purpose.

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 wes.michael@rarepatientvoice.com.

8. 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 clicking here: https://panel.rarepatientvoice.com/newdesign/site/rarepatientvoice/index.php?surveyID=u8n7uoine84e&published&id=privacypolicy.  Please be aware that even if you unsubscribe, we may maintain certain information in your registration profile for up to five (5) 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.

9. 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.

Please note that information submitted on the www.rarepatientvoice.com site or otherwise sent to Rare Patient Voice over the Internet may be transferred outside of the United States and outside of the European Economic Area (EEA), where data protection laws are not as strong as within these areas. Additionally, the United States does not place restrictions on the transfer of personal data outside of the United States. 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.

10. 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 complies with the U.S. Children’s Online Privacy Protection Act of 1998 (“COPPA”). We do 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 Wes Michael at wes.michael@rarepatientvoice.com.

11. 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 www.aboutcookies.org for instructions on how you can delete it from your computer.

12. 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.

13. For California Residents

This PRIVACY STATEMENT FOR CALIFORNIA RESIDENTS supplements the information contained in the Privacy Policy  of Rare Patient Voice, LLC (RPV)  We adopt this statement to comply with the California Consumer Privacy Act of 2018 (“CCPA”) and other California privacy laws.  Any terms defined in the CCPA have the same meaning when used in this statement.

Information which we collect
You can review the types of Personal Information which we collect in our Privacy Notice which precedes this statement, as well as below.

1. Identifiers: Name, alias, postal address, unique personal identifier, online identifier, Internet Protocol (IP) address, email address, account name, social security number (when required by law to submit form 1099) or other similar identifiers
2. Customer records information: Name, signature, social security number, physical characteristics or description, address, telephone number, education, employment, employment history, other financial information, medical information, health insurance information
3. Characteristics of protected classifications under California or federal law: Race, religion, sexual orientation, gender identity, gender expression, age
4. Internet or other electronic network activity information: Browsing history, search history, and information regarding a consumer’s interaction with an Internet website, application, or advertisement
5. Geolocation data

Sharing Personal Information

We may disclose your Personal Information to a third party for a business purpose. When we disclose Personal Information for a business purpose, we enter into a contract that describes the purpose and requires the recipient to both keep that Personal Information confidential and not use it for any purpose except performing the contract.

We disclose your Personal Information for a business purpose to the following categories of third parties:

• Our affiliates and subsidiaries
• Service Providers
• Professional services organizations, such as auditors, credit checking agencies and law firms
• Our business partners
• Internet service providers
• Government entities
• Operating systems and platforms

In the preceding twelve (12) months, we have disclosed the following categories of Personal Information for a business purpose:

1. Identifiers: Name, alias, postal address, unique personal identifier, online identifier, Internet Protocol (IP) address, email address, account name, social security number (when required by law to submit form 1099) or other similar identifiers
2. Customer records information: Name, signature, social security number, physical characteristics or description, address, telephone number, education, employment, employment history, other financial information, medical information, health insurance information
3. Characteristics of protected classifications under California or federal law: Race, religion, sexual orientation, gender identity, gender expression, age

Your Rights and Choices
Pursuant to the CCPA and subject to certain exceptions and limitations, California residents may contact us to exercise their rights with respect to certain Personal Information that we hold about them.

To the extent these rights may apply to you, they are described below.

Right to Know About Personal Information Collected, Disclosed, or Sold
You have the right to request that we provide you with details about the Personal Information we collect, use, disclose and sell.

Via Email: research@rarepatientvoice.com Via Postal Mail: Rare Patient Voice, LLC, 711 Hampton Ln., Towson, MD 21286 Via Phone: 410-218-0527

Only you or a person registered with the California Secretary of State that you authorize to act on your behalf, may make a verifiable request related to your Personal Information.

As part of this process, we may ask to verify your identity. Your request must

• Provide sufficient information that allows us to reasonably verify you are the person about whom we collected Personal Information or an authorized representative.
• Describe your request with sufficient detail that allows us to properly understand, evaluate, and respond to it.

We cannot respond to your request or provide you with Personal Information if we cannot verify your identity or authority to make the request and confirm the Personal Information relates to you.  Making a verifiable request does not require you to create an account with us.  We will only use Personal Information provided in a verifiable request to verify your identity or authority to make the request.

You are entitled to receive the following

• The categories of your Personal Information that we have collected in the preceding 12 months
• The categories of sources from which that Personal Information was collected
• The business/commercial purpose for the collection or selling
• The categories of third parties with whom we share Personal Information
• The specific pieces of Personal Information we have collected about you (subject to some exceptions)

Because we have disclosed or sold (as those words are defined in the CCPA) Personal Information to third parties in the last 12 months, you are also entitled to receive:

• The categories of Personal Information that we have disclosed or sold in the past 12 months

Right to Request Deletion of Personal Information

You have the right to request deletion of the Personal Information we have collected about you (subject to some exceptions).  You can submit your request as described above, and we reserve the right to conduct the verification described above.

We may deny your deletion request if retaining the information is necessary for us or our service providers to:

• Complete the transaction for which we collected the personal information, provide a service that you requested, or take actions reasonably anticipated within the context of our ongoing business relationship with you.
• Detect security incidents, protect against malicious, deceptive, fraudulent, or illegal activity, or prosecute those responsible for such activities.
• Debug products to identify and repair errors that impair existing intended functionality.
• Exercise free speech, ensure the right of another consumer to exercise their free speech rights, or exercise another right provided for by law.
• Comply with the California Electronic Communications Privacy Act (Cal. Penal Code § 1546 seq.).
• Engage in public or peer-reviewed scientific, historical, or statistical research in the public interest that adheres to all other applicable ethics and privacy laws, when the information’s deletion may likely render impossible or seriously impair the research’s achievement, if you previously provided informed consent.
• Enable solely internal uses that are reasonably aligned with consumer expectations based on your relationship with us.
• Comply with a legal obligation.
• Make other internal and lawful uses of that information that are compatible with the context in which you provided it.

Right to Non-Discrimination for the Exercise of a Consumer’s Privacy Rights

We will not discriminate against you for exercising any of your CCPA rights.  Unless permitted by the CCPA, we will not:

• Deny you use of our services.
• Provide you a different level or quality of services.

Right to Opt-Out of Sale of Personal Information

You have the right to opt-out of the sale of your Personal Information. You can submit a request by clicking here You can also submit a request via the methods noted below:

Via Email: research@rarepatientvoice.com Via Postal Mail: Rare Patient Voice, LLC, 711 Hampton Ln., Towson, MD 21286 Via Phone: 410-218-0527

Response Timing and Format

We endeavor to respond to a verifiable request within 45 days of its receipt.  If we require more time (up to 90 days), we will inform you of the reason and extension period in writing.

We will deliver our written response by mail or electronically, at your option.

Any disclosures we provide will only cover the 12-month period preceding receipt of a verifiable request.  The response we provide will also explain the reasons we cannot comply with a verifiable request, if applicable.

We do not charge a fee to process or respond to your verifiable request unless it is excessive, repetitive, or manifestly unfounded.  If we determine that the request warrants a fee, we will tell you why we made that decision and provide you with a cost estimate before completing your request.

Changes to this Notice

This Notice may be amended from time to time, consistent with applicable data protection and privacy laws and principles. We will notify Customers if we make changes that materially affect the way we handle Personal Information previously collected, and we will allow them to choose whether their Personal Information may be used in any materially different manner.

Contact Information

If you have any questions or comments about this notice, the ways in which we collect and use your personal information, your choices and rights regarding such use, or wish to exercise your rights under California law, please do not hesitate to contact us at:

Via Email: research@rarepatientvoice.com Via Postal Mail: Rare Patient Voice, LLC, 711 Hampton Ln., Towson, MD 21286 Via Phone: 410-218-0527

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 wwwrarepatientvoice.com site or via email.

15. How to Contact Us

If you have any queries relating to this Statement, please feel free to contact us by letter at the following address: The Panel Manager Rare Patient Voice, 711 Hampton Ln, Towson, MD 21286, USA, or by email to wes.michael@rarepatientvoice.com.  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 February 20, 2014, revised June 29,2020.