What's New at Rare Patient Voice?
Study Results
Throughout the COVID-19 pandemic, patients have started using telehealth more often. In a recent study, we asked patients about their feelings about telehealth and their experiences. Patients are in favor of using telehealth because they perceive it is safer, they do not need to travel, and it is more convenient for them than going into their doctor’s office.
Patients are in favor of using telehealth because they perceive it is safer, they do not need to travel, and it is more convenient for them than going into their doctor’s office.
Reasons that patients might not use Telehealth include lack of precision and concerns with technology glitches.
Spread the RPV Word & Receive a Rarity Plushie!
Please help us spread the word to other patients and caregivers about Rare Patient Voice by submitting a short video about your experience with us. Videos will be featured on our website, on social media, and in newsletters. Check out the growing group of RPV patients and caregivers who have recorded stories! https://rarepatientvoice.com#sharevoice
Follow these steps to record and submit your own video!
Step 1: Scan with code below with the camera app from your Apple/Android mobile device or click the link below!
https://admin.storyvine.com/app_users/sign_up/Sharing_My_Voice
Step 2: Download the Storyvine app from the App Store or Google Play
Step 3: Film and upload your video!
To thank you for recording a video, we will send you a Rarity zebra plushie AND enter you in a raffle to win a $100 Amazon gift card. Congratulations to Natalie of California, our January 3 raffle winner! Our next raffle will be held in early February.
Partner Corner
Elephants and Tea is a nonprofit media company with the mission to help adolescent and young adult (AYA) patients, survivors, and caregivers know they are not alone in their fight with cancer.
The Elephant in the room is cancer. Tea is the relief conversation provides.
Referrals?
Would you like to refer others to participate in research? You will receive $10 for everyone who signs up through your link! Become a Referral Partner
Frequently Asked Questions
Why sign up with Rare Patient Voice?
Who knows better than you about your journey and experiences? We connect you with researchers who are developing products and services which can help you and others with your condition. These researchers need patient input so that they develop products and services that have a meaningful impact on patients’ lives.
How will I be paid?
You will earn $120 per hour for participating in studies. We pay by check to ensure patients can use their compensation in any way they wish.
About Rare Patient Voice
Rare Patient Voice connects patients and caregivers with researchers who are developing products and services to help you and others with your condition. Since 2013, Rare Patient Voice has paid patients over $10 million dollars for participating in research studies.
