rarepatientvoice.comReviews of rarepatientvoice.com

In it;s early days this company was great. Now it is running scams. After a few qualifying questions about age, sex, health condition etc to make sure I was qualified to participate in a survey, I evaluated a cancer patients help website. What phrases, photos etc motivated me etc. When I was finished responding to the whole survey, they said that I wasn't qualified to participate in the survey. In other words, they had may complete evaluation but weren't going to pay the stipend promised. Shameful!

Misleading claims, invasive data collection practices, obscured financial relationships, refusal to honor both explicit and implied obligations, and insecure technical infrastructure pulling third-party assets with little regard for user privacy: these are only the beginning. After six months of patient optimism, dozens of surveys completed, and hundreds of preliminary screenings, I’ve concluded that RPV presents itself as a benevolent nonprofit with a legitimate compensation model while operating more like a data-harvesting funnel built around extracting personal information from vulnerable users. The most deceptive aspect of the platform is its carefully engineered user flow. Users are required to surrender extensive personal information and agree to broad waivers before they are even allowed to access the questionnaires presented as the actual compensated “work.” However, after investing significant time completing these lengthy and often highly invasive forms, participants are routinely informed that the questionnaires were never the paid surveys at all, but merely undisclosed “pre-screening” or “qualification” stages. In practice, this turns the entire intake process into a dark pattern designed to maximize unpaid data extraction while minimizing the platform’s obligation to compensate participants. What is framed as a simple administrative prerequisite instead functions as an opaque elimination funnel: users provide valuable demographic, behavioral, financial, and health-related information with the reasonable expectation of paid participation, only to be filtered out after the platform has already obtained the data it wanted. The result is a system that creates unjustifiable barriers to compensation while shifting all risk, time loss, and privacy exposure onto users — many of whom are financially vulnerable and specifically targeted because they are searching for supplemental income opportunities. Shame on any organization that exploits the goodwill, desperation, and trust of vulnerable people while presenting itself as charitable or community-oriented.

I completed a $60 study for this company, but they refused to pay and even deleted my account without notice. I recommend avoiding this company to prevent wasted time and effort.

This company is shady. I took my time to fill out a survey more than a month ago, and still have not received payment for it. Is it only a coincidence that all over the Internet and the Better Business Bureau there are complaints from individuals with a disease who have taken the time and effort to fill out your surveys in good faith, and you have not paid them, sometimes even two to three months afterwards? You have a video on your website stating that patients will be paid two weeks after completion of a study. Rare Patient Voice always has an excuse why they cannot pay a patient. This is unacceptable. Shame on you! Do better.