Rare Patient Voice
Rare Patient Voice recruits and manages a 200,000+ patient and caregiver panel across 1,500+ conditions and nine countries, supplying pharma, biotech, market research, and clinical trial clients with vetted respondents for studies. Founded in 2013 and acquired by Konovo in February 2026.
- Company typePrivate
- Founded2013
- HeadquartersTowson, United States
- Headcount1–10
- GTM typeB2B
- OfferingServices
What Rare Patient Voice does
Rare Patient Voice (RPV), founded in 2013 by Wes Michael and headquartered in Towson, Maryland, is a patient recruitment and market research services firm that connects pharmaceutical companies, biotech firms, healthcare market research agencies, and clinical trial sponsors with pre-vetted panels of patients and family caregivers. Its core offering is a panel of over 200,000 patients and caregivers spanning more than 1,500 rare and non-rare conditions across nine countries (United States, Canada, United Kingdom, Italy, Germany, France, Spain, Australia, and New Zealand). The platform is built around the Qone member-login and panel management system, supported by Inflow for payment processing and Research Defender for fraud prevention and panel authenticity verification.
RPV generates revenue primarily through professional-services engagements with pharma, biotech, and market research buyers, structured as a fixed setup fee per study plus per-complete fees for each wave, with a Premium Outreach Package available at Silver, Gold, and Platinum tiers for targeted recruitment. Patient and caregiver participants are compensated at a publicly disclosed rate of approximately $120 per hour, with cumulative rewards exceeding $18 million since 2013. The go-to-market combines direct enterprise sales (via a PAM proposal request system) with grassroots community-led patient acquisition through in-person events, a 6,000+ partner advocacy-organization referral network, and a $10-per-signup referral program. In February 2026, RPV was acquired by Konovo, a technology-first healthcare intelligence company, and now operates as a Konovo subsidiary while retaining its brand and operating model.
Rare Patient Voice firmographics
Firmographics- Name
- Rare Patient Voice
- Legal name
- Rare Patient Voice, LLC
- Website
- https://www.rarepatientvoice.com
- Company type
- Private
- Founded year
- 2013
- Operating status
- Operating
- Headcount range
- 1–10 employees
- Short description
- Rare Patient Voice recruits and manages a 200,000+ patient and caregiver panel across 1,500+ conditions and nine countries, supplying pharma, biotech, market research, and clinical trial clients with vetted respondents for studies. Founded in 2013 and acquired by Konovo in February 2026.
- Ownership category
- akta.pro rank
Rare Patient Voice industry classification
Industry- Product category
- Healthcare Market Research Services
- NAICS
- Social Assistance (624)
- SIC
- Services-Misc Health & Allied Services, Nec (8090), Services-Health Services (8000)
- akta.pro primary industry
- Clinical Trial Patient Recruitment & Retention (HLAGACAD)
Keywords
Where Rare Patient Voice is headquartered
LocationHeadquarters
- HQ city
- Towson
- HQ country
- United States
- HQ region
- North America
Offices1 record
Markets served
Rare Patient Voice business model
Business model- GTM type
- B2B
- Offering type
- Services
- Cost components
- Personnel, Operations, Marketing or Sales, Technology or R&D, Others
Revenue model
- Patient Study Participation Payments: Patients and caregivers earn monetary rewards for participating in research studies including surveys, interviews, online bulletin boards, focus groups, and clinical trials. Standard compensation is $120 per hour for study participation. Payments sent as printed checks or electronic payments.
- Research Recruitment Services for Pharma/Biotech: Services to pharmaceutical and biotech companies providing respondents and patient communities required to support business insight needs and all types of research studies. Fixed setup fee plus per-complete fees for each wave of study.
- Market Research Firm Recruitment Services: Patient recruitment and panel services for market research firms, including handling respondent recruitment for various research methodologies.
- Clinical Trial Recruitment: Patient recruitment services specifically for clinical trials, connecting researchers with hard-to-reach patient populations through their extensive advocacy network.
- Premium Outreach Package: Additional promotional activities and targeted support services offered at different levels (Silver, Gold, Platinum) to help researchers connect with specific patient populations for their studies.
- Referral Partner Program: $10 referral fee for each new patient or caregiver who signs up with RPV through referral partner's unique link, supporting patient advocacy groups to increase donations.
Pricing tiers
| Model | Billing | Price |
|---|---|---|
| Transaction based/ take rate | Multi-year contract | Standard Study Pricing |
| Usage-based | Pay-as-you-go | Patient/Caregiver Participation |
| Hybrid | Multi-year contract | Premium Outreach Package |
| Transaction based/ take rate | Pay-as-you-go | Referral Partner Program |
Go-to-market motion3 records
Distribution channels4 records
Marketing channels8 records
Rare Patient Voice product offering
Product offeringCore offering
Rare Patient Voice recruits and maintains panels of patients and family caregivers across over 1,500 rare and non-rare diseases in 9 countries, then connects those panelists with pharmaceutical, biotech, market research, and clinical trial clients who pay fixed setup fees plus per-complete fees for recruitment services. It delivers both qualitative and quantitative research support, clinical trial recruitment, patient advisory boards, and real-world data / HEOR services through an in-person event-driven recruitment model and a network of 6,000+ advocacy group referral partners.
Product overview
Rare Patient Voice is a patient-centered market research company that connects patients and caregivers with researchers through a comprehensive suite of services. The core offering consists of Patient/Caregiver Panels spanning over 1,500 diseases across 9 countries, supplemented by Clinical Trial Recruitment Services and Qualitative/Quantitative Research offerings. The platform provides multiple research methodologies including telephone interviews, web-assisted interviews (via Zoom, Skype, Teams), focus groups, online bulletin boards, and patient advisory boards. Additional services include Patient Advocacy Team (PAT) Outreach with a network of thousands of referral partners, Premium Outreach Packages at three tiers, and Real-World Data/HEOR capabilities. The company operates as a Konovo company and has paid patients and caregivers over $18 million since launching in 2013.
Differentiator
Problem solved
Functional benefit
Products and services
- Patient/Caregiver Panels Recruited and maintained panels of patients and family caregivers across over 1,500 rare and non-rare diseases in 9 countries for participation in market research studies including surveys, interviews, focus groups, and online bulletin boards.
- Clinical Trial Recruitment Services
Quantifiable outcome
- 50% response rate for non-cancers, up to 20% for cancers
- +3 more outcomes
Companies that use Rare Patient Voice
Customer profileNamed customers9 records
Segments4 records
Ideal customer profiles3 records
Rare Patient Voice technology and API
TechnologyTechnology focussed No
API detail
- Has API
- No
- API docs
- API detail
Core technology
AI maturity
App detail
Feature3 records
Rare Patient Voice partnerships and signals
Strategic signalPartnerships
Eight partnerships are on record, tiered core and minor.
- Cards2WarriorscoreMulti-year partnership supporting Cards2Warriors' mission to uplift patients facing long-term illnesses and rare diseases while honoring family caregivers. RPV features the logo on cards/envelopes, contributes stickers of zebra mascot 'Rarity', and hosts card writing events where team members write notes of encouragement to warriors.
- Ronald McDonald House Charities Tampa BayminorDuring first company meeting in Florida, Rare Patient Voice packed and delivered snack bags to the local Ronald McDonald House in Tampa Bay, which provides lodging for families spending time at hospitals far from home.
- MREF (Marketing Research Education Foundation)minorProud participant in MREF Race Around the World for Education fundraiser in 2021, 2022, 2023, 2024, and 2025, helping raise funds for UNICEF education programs.
- Happy Hope FactoryminorTeam members recorded themselves reading children's books for the #HopeReads program, which shares content with hospitalized children nationwide.
- Patient Advocacy Organizations (6,000+ partners)coreRare Patient Voice works with thousands of patient advocacy organizations and support groups who refer patients to RPV. Partners include organizations such as Aortic Hope, Breakthrough T1D, Breathe Support Network, Diversability, Elephants and Tea, The EPIC Foundation, The Magic Foundation, and many others. RPV offers $10 referral fee per new signup through referral program.
- Honeycomb Health (RPV Store beneficiary)minor100% of profits from Rare Patient Voice store go to support Honeycomb Health's program to build free stores for rare disease advocacy and support groups.
- Inflow (Payment Processing)coreInflow is a service that Rare Patient Voice works with for easy monetary transactions to send rewards to patients and caregivers. Uses latest industry security standards for safe and secure personal details handling.
- Research DefendercoreThird-party tool used by RPV to help ensure overall authenticity of respondents and maintain high-quality panel by reducing fraudulent entries.
Scale indicators6 records
Recent moves5 records
Expansion highlights6 records
Rare Patient Voice competitors and assessment
Company assessmentDirect peers
- ClinicalConnection: Clinical trial volunteer recruitment platform connecting patients with trial opportunities. Directly comparable to RPV's clinical trial recruitment arm, with a similar B2B2C flow via pharma sponsors and CROs.
- PatientsLikeMe: Patient community that aggregates self-reported data and supports research partnerships. Comparable to RPV's panel-based patient engagement and research services model, though with a stronger technology/data orientation.
- Antidote: Digital patient recruitment company matching patients to clinical trials. Directly comparable to RPV's clinical trial recruitment business, with a similar focus on technology-driven matching and pharma/biotech customers.
- Inspire: Online patient community platform used by researchers for patient panels and qualitative recruitment. Comparable to RPV in maintaining vetted patient communities and offering research recruitment services to pharma and biotech.
Broad incumbents
- Toluna: Global consumer and B2B research panel provider with healthcare sample capabilities. Comparable to RPV's panel-based recruitment services, with broader geographic and vertical coverage but less rare disease specialization.
- Clarivate: Life sciences intelligence and clinical research services company. Comparable as both a current RPV customer and a broader competitor offering patient recruitment, RWD, and clinical trial analytics to pharma and biotech.
- IQVIA: Global clinical research and commercial intelligence company with one of the largest patient recruitment capabilities and real-world data assets. Broader incumbent offering RPV-relevant services (trial recruitment, RWD, HEOR) as part of a much wider portfolio.
- Schlesinger Group: Large market research data collection firm operating qualitative and quantitative panels globally. Comparable to RPV's market research recruitment services for healthcare clients, though Schlesinger operates across many verticals.
- Medidata Solutions: Dassault Systèmes-owned clinical trial technology platform with patient engagement and recruitment modules. Broad incumbent competing for the same pharma/biotech R&D wallet as RPV, with greater scale and technology depth.
- Dynata: One of the world's largest first-party data and market research panel companies. Comparable to RPV in selling patient and consumer panels to research buyers, but with significantly broader scale and non-healthcare focus.
Market position
Strengths5 records
Weaknesses5 records
Competitive moat5 records
Key risks7 records
Key highlights7 records
Customer concentration
Rare Patient Voice social profiles
Digital presenceRare Patient Voice financial estimates
Financial estimateRevenue estimate
Valuation estimate
Rare Patient Voice leadership team
Management profileNumber of profiles
Profiles9 records
Rare Patient Voice funding detail
Funding detailFunding overview
Funding rounds
Investors
Funding detail is available on the Subscription and Enterprise plan.Contact sales →
Rare Patient Voice M&A and investment
M&A and investmentM&A
Investments
M&A and investment is available on the Subscription and Enterprise plan.Contact sales →
Frequently asked questions about Rare Patient Voice
What does Rare Patient Voice do?
Rare Patient Voice recruits and maintains panels of patients and family caregivers across over 1,500 rare and non-rare diseases in 9 countries, then connects those panelists with pharmaceutical, biotech, market research, and clinical trial clients who pay fixed setup fees plus per-complete fees for recruitment services. It delivers both qualitative and quantitative research support, clinical trial recruitment, patient advisory boards, and real-world data / HEOR services through an in-person event-driven recruitment model and a network of 6,000+ advocacy group referral partners.
Is Rare Patient Voice a public or private company?
Rare Patient Voice is a private company. It is classified as corporate owned and is currently operating.
When was Rare Patient Voice founded?
Rare Patient Voice was founded in 2013. It employs 1 to 10 people.
Where is Rare Patient Voice based?
Rare Patient Voice is headquartered in Towson, United States, in the North America region.
How does Rare Patient Voice make money?
Six revenue lines are on record. Patient Study Participation Payments are the primary driver. The others are research Recruitment Services for Pharma/Biotech, market Research Firm Recruitment Services, clinical Trial Recruitment, premium Outreach Package and referral Partner Program.
Who are Rare Patient Voice's main competitors?
Direct peers on record are ClinicalConnection, PatientsLikeMe, Antidote and Inspire. Broad incumbents are Toluna, Clarivate, IQVIA, Schlesinger Group, Medidata Solutions and Dynata.
Does Rare Patient Voice have an API?
No public API is recorded for Rare Patient Voice.
What industry is Rare Patient Voice in?
Rare Patient Voice's product category is Healthcare Market Research Services. Its primary akta.pro industry code is HLAGACAD, Clinical Trial Patient Recruitment & Retention. Its NAICS code is 624 and its SIC code is 8090.