Make Money Participating in Research-Rare Patient Voice Review

Have you heard of people getting paid to talk about their chronic health conditions? It seems unreal and definitely raised my suspicions when I heard of this initially. Here is my experience with Rare Patient Voice.

When a rare patient voice representative first approached me, I was apprehensive. She was very professional and introduced herself and the company. She asked me to share an opportunity with my Facebook group for women with chronic urticaria. A research study about chronic urticaria was coming up, and those who participate would be compensated at $100/hr.

Of course, I was immediately suspicious of someone saying they would pay my members for their participation in research studies. There are so many scams these days. I am very protective of my group and did not want to be fooled into sharing a scam with them.

I did some research on the company, and this is what I found.

What is Rare Patient Voice?

If you visit their website you will see “Rare Patient Voice helps patients and caregivers voice their opinions through surveys and interviews to improve medical products and services.”

They partner with pharmaceutical and medical product or service providers and match them with patients or caregivers who meet the desired criteria for the market research.

They have been in business for about 8 years.

They have an A+ with the better business bureau.

The only complaints seemed to be people who didn’t quite understand how it works, and were expecting payment for taking the initial survey to see if they qualify to participate in the research study.

What health conditions qualify me to sign up?

You can sign up for any health conditions you have been diagnosed with.

I have been invited to participate in studies for arthritis, psoriasis, eczema, IBS, migraines, and chronic hives.

When a study is available, you will be contacted by email and asked to complete a short survey to see if you qualify for the study.

How much can I make participating in market research?

I have received invitations paying anywhere from $75-$375. It seems to average out to about $100 for an hour of your time. That’s a pretty good hourly rate.

How much you earn overall will depend on how many studies you qualify for and participate in. The more diagnoses you have, the more opportunities you will have.

Who is paying for the research?

Pharmaceutical companies allocate funds for market research. You are not taking anything from anyone in need or contributing to high medication costs.

They will spend the money; it might as well be on patients who are the true experts in their condition.

My experience participating in market research for Chronic Urticaria

Initially, I received an email asking me to fill out a short survey to see if I qualified for an upcoming study about chronic urticaria.

It took me less than five minutes to complete the survey.

I received another email stating that I was qualified to participate and was asked to schedule a time for a call via Zoom.

When the time came I logged onto Zoom and called into the meeting as directed.

The coordinator introduced herself and asked permission to record. She told me a bit about what the research was for and asked a series of questions about my condition.

I was asked about symptoms, the date of diagnosis, my day-to-day experience, and my medication regimen.

I was asked to keep some parts of my experience confidential, and I will honor that.

I will say that it was a good outlet, and I found myself in tears at times as I explained how my life had been impacted and my frustrations with my doctor seeming to be uneducated about my condition.

Overall it was a good experience, and I felt good having my voice heard.

Maybe the company will educate doctors because of what I said; perhaps they will take won’t, but it felt good to talk about my experience.


As promised, I received my check in the mail less than a week later. It was a win-win.

How do I sign up?

YOU CAN SIGN UP HERE. Make sure to include all of your diagnoses so you can maximize your chances of being selected.

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