How we use your information

Your privacy is important to us!

Rare Patient Voice is a research company located in Towson, Maryland, USA, conducting market research through the participation of patients like yourself. Our research is focused on rare diseases and our primary goal is to promote health outcomes. Working with pharmaceutical manufacturers, advocacy groups and charitable organizations, we can change healthcare one Rare Patient Voice at a time.

In appreciation for participation in our research projects, participants receive an incentive or honoraria payment by check mailed directly to them at the close of the research. Rare Patient Voice does not utilize points or sweepstakes.

What information do we collect?

During the registration process, we gather personal information (name, address, age, etc.).  After registration, we ask our members to provide us with additional information regarding their condition. We do this so we can send members invitations to participate in research that best correspond with their current status and interests.

How we use your information

We use your email address to send you invitations to participate in research and to contact you with messages regarding member information. We use your email address to send gift cards, or your postal address to mail honoraria payments.

After combining your answers with those of other participants who have completed the research, we analyze the data and find significant results to deliver to our client(s). Individual responses will not be shared with our client. We will not disclose your identity!

We never link or associate any of your identifying information with your responses obtained during the research.

By signing up for Rare Patient Voice, you are providing your permission for Rare Patient Voice to collect and store information about you.

For further details, please refer to our Privacy Policy. Once you register you will be opted in to the Rare Patient Voice community, and you will be eligible to receive invitations to participate in one or more research studies. Invitation criteria vary by study.

How do I qualify? What rare and orphan diseases qualify?

Rare Patient Voice is always looking for patients and caregivers in various rare, orphan and special disease categories. Most disease categories will qualify. If you are interested, sign up and we will let you know if you qualify. Or email us at wes.michael@rarepatientvoice.com to tell us the disease category, and we’ll let you know if you qualify. Rare Patient Voice reserves the right to limit membership to one per household.

Sign up now!

Would you like your voice to be heard? Complete our easy form and join our community!
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