What's New at Rare Patient Voice?
Tips for RPV Panel Members
Do you need to update the conditions/diseases on your profile? Just follow these steps:
| 1. Log into your profile. |
| 2. Click “account”on left. |
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| 3. Click “conditions” (third in drop down menu). |
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| 4. To update your profile with a new or existing condition/disease, type it into the search box and the condition/disease will pop up in the drop down menu, then select the correct box. |
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| Be sure to delete what you have typed in the search box and type another condition/disease and so forth for all conditions/diseases. |
| If you do not see it listed, you can place it under 'other' and then type it in manually. |
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Share Your Voice and Receive a Rarity Plushie!
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 a 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.
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
Alagille Syndrome Alliance (ALGSA) is a 501c3 nonprofit for those living and dealing with Alagille Syndrome (ALGS). ALGS is a very complex genetic disorder that affects some to all the organ systems. Classified as a rare cholestatic liver disease, this syndrome affects one out of 30,000 live births. Many individuals with ALGS face liver and/or kidney disease, heart abnormalities, transplants, other invasive surgeries, and a variety of health conditions associated with ALGS. Alagille Syndrome has a wide spectrum of severity from very mild to fatal, each person having a unique version.
Burden of disease for ALGS can be very heavy and so the ALGSA supports families in many ways including meaningful family programs like disease education, financial assistance, support pages, a holiday adoption program, and more. The ALGSA also has a large presence in ALGS science, working to support scientific understanding and advancements in research to find better treatments and one day, the cure.
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.
