Rare Patient Voice

Helping Patients with Rare Diseases Voice Their Opinions

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Helping patients and caregivers share their voices

Frequently Asked Questions

How do I update my profile? Expand

Login, click your name at the top left, then account. After clicking Account, click Personal or Condition. From here you can change/update any of your signup information, including password change.

Where can I find a list of open studies? Expand

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.

What do I do if the link is unclickable? Expand

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.

How often will I get invited to a survey? Expand

Studies vary from client to client. We will invite you to every and all studies pertaining to you as they come our way.

How soon after completing a study will I get paid? Expand

https://youtu.be/K0NOGX8espo

Typically we send out all of the check rewards once the study is complete. However, if a study goes on longer than usual, we do pay respondents to-date. Contact the Project Manager on that particular study for this answer.

How can I refer other patients/caregivers? Expand

Contact the Project Manager on that particular study (for referring to a study). For referrals to join the panel, please send them RPV's Signup Page.

Why didn't I qualify for a study? Expand

https://www.youtube.com/watch?v=AV-bPC2VeW0

Contact the Project Manager on that particular study. They can look up the status of your Unique Study Link and find out why.

How do I get paid? Expand

https://youtu.be/K0NOGX8espo

We typically send check rewards. However, some smaller studies may be a Gift Card.

How do I notify you if my email address changes? Expand

Contact wes.michael@rarepatientvoice.com.

Do you sell my data? Expand

No, we never sell your data. We only use it to target you for the appropriate surveys.

Will I get marketing calls? Expand

No, we will never sell you anything or give your name to anyone who will. We send an email when we have a survey opportunity.

Is my privacy protected? Expand

Yes, the survey sponsors only get ID numbers for respondents, never personal information. We at Rare Patient Voice will only know when you have completed so we can send you your reward, but we don't see any of your survey answers.

Do I need to have an email to participate? Expand

Yes, we send all the invitations by email.

Will I get a lot of emails? Expand

We only email you when we have a study. So you may not hear from us for a few months, or you may get two emails in a week.

Do I need to pay taxes on the rewards I receive? Expand

If you receive $600 or more in a year, we will require your Social Security number and will send you a 1099, which you need to declare on your taxes.

Can patients/caregivers from any country be members? Expand

You can now sign up from any country. Currently our work focuses on the US, Canada, UK, France, Germany, Italy, Spain, Australia, and New Zealand. If you live in a country other than those, please check "other country" in the sign up. We may not have studies for you at the moment, but you can sign up now and be able to participate in the future when we have studies in your country.

I don't have a bank account, how can I cash my check? Expand

Many patients without bank accounts report the best way to cash a check is to endorse it over a trusted friend or relative who can deposit or cash it and give you the money. Also, some stores like Walmart cash checks.

I can't login. How do I login to My Panel Dashboard? Expand

Make sure you log in with the email address which you used to register at our panel. This is the same email address we use to send you survey invitations.

I forgot my password. Expand

Click on the ‘Forgot password’ link on the log in page and enter the email address which you used to register at our panel. You can enter your registered e-mail on this page and click the Reset Password button - the new password will be e-mailed to you shortly.

I have reset my password, but didn't get an email with my new password. Expand

Please check your spam folder if the email with the new password ended up there. If not, please contact Wes.Michael@RarePatientVoice.com.  He will be able to help you further.

I want to change my email address outside the self-serve portal. Expand

You can't change your email address outside the portal yourself. Please contact Wes. Michael@RarePatientVoice.com. He will be able to help you further.

I have not found the answer I am looking for. Expand

Please contact Wes Michael (wes.michael@rarepatientvoice.com).

How do I protect my Rare Patient Voice panel account and data? Expand

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.
What does Rare Patient Voice do with my email address? Expand

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.

What happens with my (Survey) data? Expand

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.

What is a cookie? Expand

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.

I have a complaint. Expand

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.

Is my information saved automatically when I update my profile? Expand

Yes!  Your information automatically saves when you click out of each text box.

How long are your checks good for? Expand

Our checks don’t expire.

Check Out Our YouTube Channel!

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Rare Patient Voice

711 Hampton Lane
Towson, Maryland 21286
ContactUs@RarePatientVoice.com
(443) 986-1949

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