What's New at Rare Patient Voice?
RPV Returns To In-Person Events!
It’s been a long two+ years of not meeting patients and caregivers at live events, which were canceled because of COVID19. We are very happy to announce that patient events are returning, and so are we! RPV will be attending the following event later this week. If your organization is planning an in-person event that you think we should be at, please let us know!
May 27-29 The 24th Annual Family Cafe Orlando, FL
Since 1998, The Annual Family Café has brought Floridians with all types of disabilities together for three days of information, training, and networking. With a range of individual breakout sessions, an exhibit hall with dozens of vendors, and a series of special events including keynote speakers and The Governors’ Summit on Disabilities, The Annual Family Café offers attendees exposure to resources on a grand scale, unprecedented access to policy-making officials, and a chance to network with other individuals with disabilities and their families
Share Your Voice Via Video, Receive Rarity!
Help us spread the word to other patients and caregivers about RPV by submitting a short video on your experience with us. Check out the growing group of patients and caregivers who have recorded stories: https://rarepatientvoice.com#sharevoice. As thanks 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 our April winner, Susan!
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!
Partner Corner
Johnny Crowder is the Founder and CEO of CopeNotes.com, a daily mental health support app. Here, he talks about why he created Cope Notes.
“When I was growing up, I thought only people living with severe mental illness needed to use mental health resources. That's kind of like saying that only people with cavities need to brush their teeth!
I created Cope Notes to help people from all walks of life improve their mental and emotional health on a daily basis. Whether you're living with a diagnosis or not, Cope Notes uses daily text messages to train your brain to think healthier thoughts. Pretty cool, right? Give it a try and let me know what you think!”
Check out Johnny talking about Cope Notes and mental health on TedX: https://copenotes.com/tedx/. To learn more, please visit www.copenotes.com.
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 $100 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. RPV has paid patients over $8 million dollars since 2013 for participating in research studies.
