What's New at Rare Patient Voice?
Study Results
The road to a correct diagnosis and effective treatment plan remains a frustrating challenge for many patients and their families. Rare Patient Voice partnered with MediFind, an advanced digital health platform helping people facing complex health challenges find care, and surveyed 1,229 members of the RPV community on their current journey to diagnosis and care. The resulting report, "The Long and Winding Road to Care'' can be downloaded here. As part of the survey, we asked patients what they thought could have led to a faster accurate diagnosis. The following are the top responses we received in response to: “What do you think could have led to a faster correct diagnosis, if anything?”
Faster diagnosis
Share a Video, Receive a 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!
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
Steve Brown is a lifelong endurance enthusiast who has been racing triathlons and marathons for over 35 years. He’s also been living with a chronic and incurable form of blood cancer called chronic lymphocytic leukemia for 16 years. Steve uses his passion for endurance sports as a weapon in his own treatment arsenal and encourages others to use movement as a way of breaking through barriers and understanding that all things are possible. He draws parallel lines between the challenges we all face in life and the challenges faced in the world of multisport racing.
Steve abides by four simple, universal keys to help him stay grounded and on the happy path: 1 - Always be where your feet are. Don’t burn too many calories thinking about the past or worrying about the future. 2 - Understand that we all have choices in life, and exercise those choices. 3 – Regardless of what curve balls life may throw at you, never forget to continue to satisfy your emotional sweet tooth by doing something that brings you pure joy. And 4 – MOVEMENT is MEDICINE. Get up and GO whenever possible.
Steve has worked with a number of organizations since his diagnosis in an effort to raise awareness and help provide a platform and a voice for the cancer patient community. To learn more about Steve, aka Remission Man, visit http://remissionman.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 $10 million dollars since 2013 for participating in research studies.
