"I recently participated in an epilepsy study and was paid very fast. The study was interesting and I actually learned something from it. This organization is completely legit and I can't wait for more studies with you all. Thanks so much."
Share your Voice to improve patients' lives!
Rare Patient Voice provides patients with the opportunity to share their voices to improve medical products and services. Who knows better than you about your journey and experiences? We connect you with researchers who are developing products and services to improve the lives of patients with rare diseases. Your voice can help you as well as others with your condition.
When you join Rare Patient Voice, you may be invited to participate in interviews, surveys, or online communities where you will share your insights.
- By signing up, you will earn $120 (USD) per hour (typically) for participating in these studies.
- If you earn over $600 (USD) in one calendar year, we are required by law to obtain your social security number for IRS reporting (Form 1099).
- Read more about how we use your information.
- You will earn $120 (USD) per hour (typically) for participating in these studies.
- Read more about how we use your information.
By making your voice heard, you are a catalyst for change. Rest assured that your input will be used to help other patients like you!
We usually have hundreds of studies running at any time, so there are many opportunities to participate. Currently, we are looking for patients and caregivers with many different health conditions. However, that does not guarantee we will have surveys for you. You might not hear from us for several months, or you might hear from us twice in one week!
We are extremely proud to say that we've awarded patients and caregivers with over $13 million for participating in surveys and interviews since 2013!
Want to learn more about some of our partners?
We have over 5,000 referral partners and still growing. Here are a few.
Have questions?
Check out our Frequently Asked Questions or email ContactUs@RarePatientVoice.com.
Study Opportunities
We have hundreds of studies open for patients and caregivers! See some of them here.
Meet us in person!
Rare Patient Voice likes it best when we can meet our members in person! Find us in the community or let us know about an upcoming patient event.
Already a member and need to update your profile?
If you would like to update your profile, here are some easy steps:
- Log in to your account
- Click personal or conditions
- From here you can change/update any of your signup information, including changing your email address and/or password, your medication(s) and your condition(s).
