What's New at Rare Patient Voice?
Connecting with the right primary care physician and/or specialist can be incredibly important for patients and their caregivers. 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.
Patients have a lot to say about finding the best physician for them. The following are the top responses we received in the survey in response to: “What difference, if any, has finding the right doctor made to the patient?”
Record a Video, Receive a Rarity!
Check out the growing group of patients and caregivers who have recorded videos about their Rare Patient Voice experience: https://rarepatientvoice.com#sharevoice. 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 Jason, our latest winner!
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!
Step 2: Download the Storyvine app from the App Store or Google Play
Step 3: Film and upload your video!
We Value Your Time!
We appreciate your participation and being part of the RPV community, even if you don't qualify for a particular study. Starting in September, each month we will automatically enter people who tried but did not qualify for a study into a raffle for a $100 Amazon gift card. Each month the randomly chosen winner will be notified via email.
Did You Know?
If you are signed up with RPV and have provided your cell phone number, we can reach out to you with study opportunities via text. Be sure to save our SMS study invite phone number as a contact in your mobile device so you can quickly recognize invites. That number is +1 (323) 746-8359.
If you are not sure if your mobile device is set to receive SMS study invites, please contact firstname.lastname@example.org.
Inspired by my mom's journey with pulmonary fibrosis (PF), I started the Breathe Support Network, an online PF support group network. PF is a little known, progressive and terminal lung disease with no cure. The only treatments to date are designed to slow progression. PF is stealing the breath from our loved ones worldwide.
The Breathe Support Networks mission is to provide support & education for PF patients and families, helping them to better #LIVEwithPF. This includes, but is not limited to:
- peer-to-peer support for those diagnosed with PF, as well as their caregiver and loved ones
- education about PF
- guiding patients and families on how to talk to their healthcare team
- providing tips to live a healthier more productive life
- providing information about other PF resources
Currently, due to a lack of knowledge in the medical community about how to accurately and quickly diagnose or treat someone with PF, most education for patients & loved ones happens in the support group system. Most with PF spend years trying to get the right diagnosis. Once diagnosed, it's important to have a PF expert treating them. Most in healthcare are not PF experts, not even many in pulmonary medicine. Our network helps those on the PF journey to not only learn but often to get connected with the right healthcare team for their treatment.
With the COVID pandemic, we now have another cause to this disease with over 200 types. COVID PF has become more widespread & will likely continue. For this reason, our latest support group for COVID PF patients & loved ones has opened in our network, bringing us to 7 groups and a business page to accomplish our mission.
Along with helping PF patients & loved ones, our goal is to make PF a household word, as well known as cancer, so every PF patient gets diagnosed quickly and gets the same quality of care.
Check out the Breathe Support Network at www.BreatheSupport.org.
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.