This Privacy Policy governs how Rare Patient Voice, LLC collects, stores, and uses your data within the company and its 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.
- We will never try to sell you anything – that is not our business.
- Occasionally, we may contact you to validate responses. We will never misrepresent ourselves or what we are doing.
- Your decisions about participating in a study, responding to specific questions, or discontinuing participation will be respected without question.
1. Information We Collect
Rare Patient Voice, LLC provides survey respondents with the opportunity to express opinions and attitudes about healthcare issues.
When you register as member of Rare Patient Voice, we collect the following personal identifying information: your name, postal service address, email address, IP address, and phone number. We also collect the following information to better target you for the appropriate surveys: patient or caregiver status, gender, birth year, race/ethnicity, preferred language, disease/condition, disease type/subtype, medications, and devices.
| Information Collected | How Information is Used | Lawful Use | ||
| Name Phone Number Email Address |
Collected by Rare Patient Voice during registration of new members and used to contact you regarding updates and opportunities to participate in surveys.
Never disclosed to any third party. |
Consent - provided by you to Rare Patient Voice at time of registration. | ||
| Name Phone Number Email Address Additional information related to the specific study. |
Collected during the screening process for certain studies to be used by clients while conducting these studies.
Disclosed to our clients for use in contacting you directly to participate in select studies. |
Consent - provided by you to Rare Patient Voice during the screening process. | ||
| Patient/Caregiver status Gender Birth year Race/ethnicity Preferred language Disease/condition Disease type/subtype Medications Devices |
Collected by Rare Patient Voice at time of registration and used to target you for appropriate surveys.
Never disclosed directly to any third parties. |
Consent - provided by you to Rare Patient Voice at time of registration. | ||
| Name Mailing Address Email Address |
Collected by Rare Patient Voice for the processing of compensation.
Disclosed at time of payment to third party payment processor to process payment on behalf of Rare Patient Voice. |
Consent and/or Legitimate interests - for the processing of compensation. | ||
| Social Security Number (SSN) | Collected by Rare Patient Voice for IRS reporting – 1099. Collected only for residents of the United States receiving $600 or more in compensation in a single calendar year.
Shared with the United States IRS as required for 1099 tax reporting. |
Consent and/or Legitimate interests - for the processing of compensation. | ||
| Name Phone Number Email Address |
Collected by Rare Patient Voice during registration and participation in surveys.
In rare circumstances when an adverse event is identified during a study, this data is disclosed to our client as required by law to contact you for the reporting of such adverse events. |
Consent - provided by you to Rare Patient Voice at time of registration. | ||
| IP Address History Geolocation data |
Collected by Rare Patient Voice from your browser to confirm your country.
Never disclosed to any third party. |
Consent and/or Legitimate interests - for the processing of registration and study targeting. |
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 may be required to disclose your information in response to lawful requests by public authorities, including to meet national security or law enforcement requirements.
We retain all information in our systems until specifically requested by you to delete it.
2. Information Collected in Surveys
Rare Patient Voice asks panel members for their opinions about a variety of products and services by asking them via email to complete surveys on behalf of our clients. Surveys may be programmed or hosted by third parties, who may collect the survey data. Clients list the general demographic requirements (such as age range and health condition) of individuals that they want to participate in a survey. Based on the client’s needs, Rare Patient Voice contacts individuals who have registered and invites them to participate.
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 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.
By registering on the www.rarepatientvoice.com site, you agree to receive emails from us, such as survey invitations and reminders, responses to inquiries that you submitted on our site, and inquiries regarding your status as a Rare Patient Voice member.
Rare Patient Voice will never provide your payment details to our clients. Some clients who pay you directly will collect payment details during the study. If Rare Patient Voice 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, all members will be notified.
3. Email Communications from Rare Patient Voice
Rare Patient Voice does not send unsolicited commercial emails. 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 for CAN-SPAM requests.
In addition, all survey invitations sent via email are consistent with the Insights Association Code of Standards and Ethics for Marketing Research and Data Analytics.
4. Changing the Personal Information You’ve Provided
If you wish to change any personal information you provided during registration, you can do that in your profile. If you wish to change information you provided during a survey, you should contact your project manager. You can always contact us at privacy@rarepatientvoice.com.
5. 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
Once you have unsubscribed, you will not be invited to any further studies. Please be aware that even if you unsubscribe, we may maintain certain information in your registration profile for ordinary business purposes such as for tax purposes and to keep a record that you opted out.
6. Safety and Security
We use various measures to secure your data. We use HIPAA-compliant secure file sharing service to transmit data. We have implemented technical safeguards to protect Personal Data from loss, misuse, and unauthorized access, disclosure, alteration, or destruction. For example, electronically stored Personal Data is stored on a secure network with firewall protection, and access to our electronic information systems requires user authentication via password. We also employ access restrictions, limiting the scope of employees who have access to Personal Data and utilize multifactor authentication on supported platforms. We use secure encryption technology to protect certain categories of personal data.
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.
7. Children’s Privacy
Rare Patient Voice believes that it’s especially important to protect children’s privacy online. 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 year, and if an individual enters a birth year 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.
8. Cookies
Rare Patient Voice uses cookies on our registration and survey forms during the time you are actively completing the forms. The system uses cookies for all areas where a log in is required and on surveys in order for a survey site to operate correctly. For example, we use cookies to authenticate you. When you open a survey, authentication cookies are set, which let us know who you are when responding to our surveys. To participate in our studies you must accept cookies.
9. Other Websites
When patients and caregivers participate in a survey, they will be transferred to a partner site for survey completion. When this occurs the privacy policies and practices of that web site will apply.
10. Contact Information
If you have any questions or comments please do not hesitate to contact us at:
Via Email:
privacy@rarepatientvoice.com
Via Postal Mail:
Rare Patient Voice, LLC, 711 Hampton Ln., Towson, MD 21286
Via Phone:
443-986-1949
11. EU-US DPF, UK Extension to the EU-US DPF
For complete RPV Privacy Policy for UK & EEA [incl. EU] 2024, please visit https://rarepatientvoice.com/wp-content/uploads/2024/10/RPV-Privacy-Policy-for-UK-EEA-incl.-EU-2024.pdf
Rare Patient Voice, LLC complies with the EU-U.S. Data Privacy Framework (EU-U.S. DPF) and the UK Extension to the EU-U.S. DPF as set forth by the U.S. Department of Commerce. Rare Patient Voice, LLC has certified to the U.S. Department of Commerce that it adheres to the EU-U.S. Data Privacy Framework Principles (EU-U.S. DPF Principles) with regard to the processing of personal data received from the European Union in reliance on the EU-U.S. DPF and from the United Kingdom (and Gibraltar) in reliance on the UK Extension to the EU-U.S. DPF. If there is any conflict between the terms in this privacy policy and the EU-U.S. DPF Principles, the Principles shall govern. To learn more about the Data Privacy Framework (DPF) program, and to view our certification, please visit the Data privacy framework website.
In compliance with the EU-U.S. DPF and the UK Extension to the EU-U.S. DPF, Rare Patient Voice, LLC commits to refer unresolved complaints concerning our handling of personal data received in reliance on the EU-U.S. DPF and the UK Extension to the EU-U.S. DPF to the Insights Association Data Privacy Framework Services, a non-profit alternative dispute resolution provider located in the United States and operated by the Insights Association. If you do not receive timely acknowledgment of your DPF Principles-related complaint from us, or if we have not addressed your DPF Principles-related complaint to your satisfaction, please visit https://www.insightsassociation.org/Resources/Data-Privacy-Framework/Information-for-EU-Swiss-Citizens-to-file-a-complaint for more information or to file a complaint. These dispute resolution services are provided at no cost to you.
The Federal Trade Commission has jurisdiction over Rare Patient Voice, LLC’s compliance with the EU-U.S. Data Privacy Framework (EU-U.S. DPF) and the UK Extension to the EU-U.S. DPF.
Individuals under certain limited conditions, may invoke binding arbitration for complaints regarding DPF compliance not resolved by any of the other DPF mechanisms. More information can be found at this link: https://www.dataprivacyframework.gov/s/article/ANNEX-I-introduction-dpf?tabset-35584=2
In cases of onward transfers of data, received pursuant to the EU-U.S. DPF and the UK Extension to the EU-U.S. DPF, Rare Patient Voice, LLC is potentially liable.
12. US State Residents Privacy Rights
Rare Patient Voice voluntarily makes best efforts to comply with the US State Privacy laws and provide you the ability to exercise your rights under these laws. Therefore, as a resident of some US States, you may have certain privacy rights under these laws such as the California Consumer Privacy Act of 2018. Based on your state of residency and the applicable privacy laws, you may have one or more of the following rights.
Right to access
You may have the right to access the information or categories of information collected about you, how it was collected, the purpose for collection, sale or sharing and the categories of third parties with whom your data was shared or sold.
Right to correct
You may have the right to request that incorrect or outdated personal information be corrected.
Right to delete
You may have the right to request deletion of personal information under certain conditions.
Right to opt out of certain processing
You may have the right to restrict our ability to process personal information about you.
Right to portability
You may have the right to request personal information be disclosed to you in a common file format.
Right to opt out of sales
You may have the right to opt out of the sale of your personal information to third parties.
Right to opt in for sensitive data processing
You may have the right to opt in before we can process your sensitive data.
Private right of action
You may have the right to seek civil damages from us for violations of a statute.
Right to Non-Discrimination for Exercising of Privacy Rights
We will not discriminate against you for exercising any of your legally afforded privacy rights.
Unless permitted by applicable laws, we will not:
- Deny you the use of our services.
- Provide you a different level or quality of services.
13. EU General Data Protection Regulation (GDPR) Rights
Right to Access (Article 15)
You have the right to obtain from us confirmation as to whether or not your personal data is being processed by us and receive information about that data.
Right to Rectification/Correction (Article 16)
You have the right to access your information and to correct, amend or delete inaccurate information.
Right to Erasure (Article 17)
You have the right to request that your information be deleted from our systems.
Right to Restriction of Processing (Article 18)
You have the right to request that we stop processing your information at any time.
Right to Data Portability (Article 20)
You have the right to request a copy of the personal data you provided to us in a structured, commonly used and machine-readable format. You may also request that we transfer a copy of your personal data to another controller where technically feasible.
Right to Object (Article 21)
You have the right to object to the processing of your personal data at any time.
Right to file a complaint
You have the right to file a complaint with a supervisory authority.
14. Exercising Your Rights
Only you, or in some states, a person 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 your request to verify your identity or authority to make the request.
To exercise your US State or GDPR privacy rights, please contact Rare Patient Voice as follows:
- Via email – privacy@rarepatientvoice.com
- Via Postal Mail – Rare Patient Voice, LLC, 711 Hampton Ln., Towson, MD 21286 USA
- Via Phone – (443) 986-1949
When contacting us to exercise your rights, you must include the following information so that we may verify your identity prior to taking action.
- Name
- Phone
- Project number (optional but helpful)
We will send you a follow up email to confirm your identity prior to fulfilling your request.
Response Timing and Format
We endeavor to respond to all verifiable requests 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 required legal period preceding receipt of a verifiable request. The response we provide will also explain any 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.
Limitations to Requests for Deletion of Personal Information
Rare Patient Voice may be required to keep limited identifying information about you in order to maintain accurate records of your requests and track certain rights requests. Any information retained will only be used for these purposes to ensure we continue to comply with your requests.
15. Changes to this Policy
This Notice may be amended from time to time, consistent with applicable data protection and privacy laws and principles. We will notify panel members 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.
16. Effective Date
This privacy policy is in effect as of August 8, 2024.
