If you would like to view and update your profile, please follow the link below:
https://panel.
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To update your profile with a new or existing professionally diagnosed condition/disease, type it into the search box and the condition/disease will pop-up in the drop-down menu, then select the correct box.
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Be sure to delete what you have typed in the search box and type another condition/disease and so forth for all conditions/diseases.
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If you do NOT see it listed, you can place it under 'other' and then type it in manually.
We currently have hundreds of studies open for patients and caregivers! To see some of the studies we are working to fill immediately, please click here.
Copy/paste the URL (to the link) in your web browser. If that does not work, simply contact the Project Manager on that particular Study.
As we receive studies that match the conditions/diseases you are professionally diagnosed with as listed on your profile, we will automatically email you invitations to those studies.
Rewards are sent once the study is complete. However, if a study goes on longer than usual, we do pay respondents to-date. For more details, contact the project manager for that study.
Inflow is a service that Rare Patient Voice works with that allows for easy monetary transactions to be sent to different recipients. Inflow uses the latest industry security standards so you may rest assured that your personal details are safe and secure.
Please email your request regarding a referral to: patientadvocacyteam@rarepatientvoice.com
There are a number of reasons why you may not have qualified for a study, including the possibility that the number of respondents for that study has been reached. If you’d like to know the reason you didn’t qualify, contact the project manager on that particular study.
Rewards are sent as printed checks or as electronic payments if you have chosen that option. Participation in some smaller studies may be rewarded with a gift card.
No, we never sell your data. To learn more, visit: https://rarepatientvoice.com/for-patients/how-we-use-your-information/
No, we will never sell you anything or give your name to anyone who will.
The client receives only respondent ID numbers, not your personal information. RPV is notified only upon your study completion. We do not have access to your study answers.
Yes, we send all the invitations by email.
As we receive studies that match the conditions/diseases you are professionally diagnosed with as listed on your profile, we will automatically invite you to those studies via email. You may not hear from us for a few months, aside from our monthly newsletter, or you may get two emails in a week.
If you earn $600 (USD) or more in a calendar year, we are required by law to
collect your Social Security number for IRS reporting (Form 1099). Please note that
this $600 includes both referral fees and study payments combined.
You can now register from any country, though our current focus is on the US, Canada, UK, France, Germany, Italy, Spain, Australia, and New Zealand. If you reside elsewhere, please select "other country" from the dropdown menu during registration. Although we may not have studies available for you immediately, signing up now ensures you'll be ready to participate when studies become available in your country.
If you would like to login, please follow the below link:
https://panel.rarepatientvoice.com/newdesign/site/rarepatientvoice/memberdashboard.php
To reset your password, please follow the link below:
https://panel.rarepatientvoice.com/newdesign/site/rarepatientvoice/memberpasswordreset.php
You can't change your email address outside the portal yourself. Please contact contactus@rarepatientvoice.com.
Feel free to reach out to us with your question at: contactus@rarepatientvoice.com.
Here are a few tips and best practices that you should follow with your Rare Patient Voice panel member account and anywhere on the internet to keep your account and data safe and secure:
- Never share your password.
- Change the temporary password you received from us when registering.
- Create a strong password with digits and special characters. Tip: A long sentence is better than a short password.
- Don't use the same password for other websites.
- Frequently update your password.
- Keep your computer system, virus scanners, firewalls and software up to date.
- Use a secure browser like Chrome or Firefox.
- Always log out of your account.
- Scan your computer frequently for viruses.
- Don't open links in emails or open attachments of senders you don't know.
Rare Patient Voice uses your email address to invite you to market research studies and to contact you with information about honoraria you earned for participating in our studies. Rare Patient Voice does not forward your email address to third parties.
Your data and responses go directly to the client sponsoring the study and are used for market research purposes only. Rare Patient Voice does not see your survey or interview responses.
Cookies are small bits of data stored on devices (computer, mobile phone, tablet, etc.) that recognize users. Each cookie expires after a certain period depending on what it's used for. We use cookies in order for the 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.
If you have a complaint regarding to our quality of service, surveys, honoraria payments, or if you have any concerns about our terms & conditions or privacy policies, we encourage you to get in touch with us, so we can try to resolve your complaint or concern as quickly as possible. Contact the project manager if your complaint is about a survey (you'll find their email address in the emails they have sent you about the project) and please include the project number. Or feel free to contact wes.michael@rarepatientvoice.com.
Yes! Your information automatically saves when you click out of each text box.
Most banks honor checks within six months of their being dated. If you find an uncashed check from RPV that is older than that, please let us know and we will issue a new one.
