In the rare disease advocacy world largely shaped by large nonprofits and small mom-and-pop charities, Rare Patient Voice (RPV) is an outlier: a recruitment company that pays patients and caregivers to share their perspectives through surveys, Zoom interviews and focus groups.
Founded by marketing executive Wes Michael in 2013, RPV today has more than 200,000 registered patients and family caregivers spanning rare, chronic and complex conditions in the United States, Australia, Canada, France, Germany, Italy, New Zealand, Spain and the United Kingdom.
The for-profit company’s mission is to match patients with clinical trials, surveys and products. Since its establishment, RPV has recruited for thousands of studies while rewarding patients and caregivers with more than $15 million for their participation.
“At Rare Patient Voice, we give patients and caregivers — meaning family caregivers, moms of kids or adult children of seniors, whatever it might be — a chance to share their voices, opinions, and experiences, typically by completing surveys or doing interviews or taking part in clinical trials,” Michael said by phone from RPV’s office in Towson, Maryland.
Listen to a podcast with Wes Michael on Rare Disease Advisor, a FNAIT Companion sister site.
On Feb. 3, 2026, RPV announced its takeover by Konovo, a healthcare technology company based in Watertown, Massachusetts. Konovo said in a press release that its acquisition of RPV for an undisclosed price “combines RPV’s deep patient relationships and proven recruitment expertise with Konovo’s intelligent platform, HCP access and global scale, enabling healthcare researchers to access hard-to-reach patient populations with speed and reliability.”
Michael said the acquisition will “create new opportunities for researchers to engage patient and caregiver audiences more effectively, unlocking insights that were previously hard to reach.”
Helping rare disease patients and caregivers tell their stories
Armed with an extensive background in market research, surveys, and interviews, Michael said he got into healthcare after noticing that patients and caregivers wanted to share their stories.
“They were so excited that somebody cared to hear what they had to say,” he said. “But it’s difficult to find them, especially those with rare diseases. Market researchers can find people who eat breakfast cereals or drive cars, but how do you find people with a rare disease?”
RPV now covers at least 1,500 diseases — both rare and common ones — ranging from ANCA-associated vasculitis and achondroplasia to Wilson disease and X-linked Alport syndrome. But Michael began with hemophilia.
“I started with that one simply because a client came to me where I had worked before and asked ‘Can you create a community of people with hemophilia? We really want to learn what they’re thinking and feeling so we can provide better products and services.’ It all started from there.”
“I had experience recruiting patients at events, conferences, and fundraising walks. That’s how we started,” he said. “I would go to patient events for hemophilia or lupus or multiple sclerosis. They would sign up, and we would send them an email when we had a request for their opinion on a survey, and it went from there.”
White papers examine topics affecting rare disease patients
RPV employs 42 people full-time, and pays patients and caregivers $120 an hour for their time and input. That can be in the form of a 30-minute online survey, for which they’ll receive $60, or a one-hour Zoom interview for $120. But they not compensated for clinical trial participation.
“Once people are aware of a trial, they’re very eager to take part if it is at all possible,” he said. “But they still have a regular life to lead. They still have jobs, and to get their kids to school. People are not just patients. They have whole other lives than being a patient or a caregiver, and you have to take that into account.”
In 2024 and 2025, RPV released a number of reports on subjects ranging from patient insight into the design of clinical trials to fighting fraud in research.
“Our direct clients are generally other research firms that write surveys and analyze data,” Michael said. “Their clients, in turn are generally the biotech and pharma companies, maybe device companies. They work in concert to come up with a survey and interview, and to design it.”
RPV’s most recent project involved assessing mental health needs among rare disease patients and their caregivers.
The white paper, the findings of which are based on surveys conducted in 2025 with 958 people in the United States, found that 82.4% of respondents experienced frequent emotional distress that interferes with their daily lives.
“The research demonstrates that mental health burden is the norm — not the exception — within the rare disease community. Both patients and caregivers experience similar levels of emotional distress, with anxiety about the future affecting 82.7% of respondents and medical uncertainty causing stress for 75.1%” the paper says.
“Despite these high rates of distress, only 30% have accessed professional mental health services, revealing a critical gap between need and support.”
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