Your privacy is important to us!
Rare Patient Voice will always protect your privacy. We will not sell your personal information or share any information without your consent.
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 corresponds 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.
We never link or associate any of your identifying information with your responses obtained during the research.
By signing up with Rare Patient Voice, you are providing your permission for Rare Patient Voice to collect and store information about you.
How do I qualify?
Rare Patient Voice is always looking for patients and caregivers to join our community. Most health conditions will qualify. If you are interested, sign up and we will let you know if you qualify. Or email us at firstname.lastname@example.org to tell us the disease category, and we’ll let you know if you qualify.