What's New at Rare Patient Voice?
Study Results - Early Look
Here’s something that might surprise you: TV commercials for drugs often leave viewers with positive feelings. Rare Patient Voice recently conducted a survey of over 2,000 patients and family caregivers on their feelings regarding television advertisements for treatments and medications. While the full results will be revealed later this month at the 2023 DTC National conference, here is an early look at one of the interesting findings.
When asked how TV advertisements of treatments and medications make them feel, more than half of patients and family caregivers responded positively:
- 65% reported a positive feeling such as curiosity, hopefulness, and interest.
- 20% reported feeling intimidated by potential side effects.
- 15% reported a negative feeling such as being annoyed, bored, skeptical, or frustrated.
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. Each month we automatically enter people who tried but did not qualify for a study into a raffle for a $100 Amazon gift card. The randomly chosen winner is then notified via email. Congratulations to our latest winner, Jennifer!
Partner Corner
Diversability is an award-winning community-based organization to elevate disability pride and increase the well-being, visibility, and inclusion of people with disabilities. It was founded in 2009 by Tiffany Yu, a disabled woman woman of color and is run today by a 100% disabled team of 8. Diversability’s work touches on 6 of the UN’s Sustainable Development Goals. Diversability provides disabled folks with direct access to community, visibility, and engaged allyship across our growing ecosystem of 80,000.
Community: Disabled folks tend to be socially isolated. Diversability offers community via a membership-based leadership collective called the Diversability Leadership Collective (DLC), as well as a free Facebook group. These communities offer peer community and support.
The Diversability Leadership Collective (DLC) also offers a space for folks to accelerate their disability leadership and advocacy. The DLC provides tailored resources such as Community mixers, Masterclasses, Fireside Chats with prominent disabled leaders, as well as access to exclusive and curated opportunities that have resulted in over $32,000 of paid opportunities for our members.
Visibility: Diversability seeks to amplify disabled people and increase disability visibility through events, content, and more. Diversability Unplugged is our monthly virtual panel event series that highlight various aspects of disability, with an emphasis on disability intersectionality, and are open to the public. Follow us on social media @diversability to check out our upcoming programming. Our content focuses on amplification, advocacy, and representation. Follow us on Instagram, Facebook, LinkedIn and TikTok. Our annual D-30 Disability Impact List highlights the most impactful disabled leaders globally and nominations open in May!
Engaged Allyship: We are driving the inclusion of disabled people by creating channels of direct access between our disabled leaders and non-disabled allies. Engaged allyship is how we’re hoping to build a more diverse, equitable and accessible world, and how our allies can further their DEI goals. Ask us about how you can be an engaged ally here.
Referrals?
Would you like to spread the word about RPV and refer others to participate in research? You will receive $10 for everyone who signs up through your link! Become a Referral Partner
Staff Spotlight
Get to know our team! This month, meet Sarah Sanders, Senior Project Manager for Rare Patient Voice.
Sarah earned a BA from Towson University in 2017 with a degree in Environmental Biology. She started at Rare Patient Voice in 2016 helping with data entry, and then became a Patient Advocate. Soon she began working in data operations as well as helping with proposal development, and is now a Senior Project Manager. Spending time in different departments at RPV has given Sarah a birdseye view of the company’s inner workings and how they align to the firm’s core goals.
“What makes me the most proud of working for RPV is how we all embody our vision, mission, and core values. We don't just talk the talk, we walk the walk, everyday. Every member on our team shares the common goal of including the patient voice in each research project we have the pleasure to work on.”
When not managing projects at work, Sarah manages life on a small farm with her husband and two children, two dogs, and a host of goats, chickens, and other farm animals.
Current Study Opportunities
We have hundreds of studies open for patients and caregivers! Some of the studies we are working to fill immediately are listed below.
1. If you are already a member of Rare Patient Voice and want to be considered for a study listed below, please contact study.inquiries@rarepatientvoice.com
2. If you are NOT a member, please click here to complete the sign-up process and include all medical conditions to be considered for one or more of the studies below and any other relevant studies.
Please feel free to share this page with friends or family who might be interested!
United States
Mastocytosis (MCAD) patients United States
20-minute online survey, compensation is $40
Rheumatoid Arthritis patients (users of Humira biosimilars) United States
60-minute web-assisted phone interview, compensation is $120
Bladder Cancer non-caucasian patients United States
60-minute focus group, compensation is $120
Vitiligo patients United States
60-minute web-assisted phone interview, compensation is $120
Ulcerative Colitis (UC) patients United States
45-minute online survey, compensation is $90
Spinal Muscular Atrophy (SMA) patients United States
45-minute web-assisted phone interview, compensation is $90
Nasopharyngeal Carcinoma (NPC) patients and family caregivers United States
60-minute online bulletin board, compensation is $120
Myelodysplastic Syndrome (MDS) patients 35+ years and family caregivers United States
60-minute web-assisted phone interview, compensation is $120
Pulmonary Hypertension Arterial patients United States
60-minute web-assisted phone interview, compensation is $120
Metastatic Non Small Cell Lung Cancer patients United States
30-minute online survey, compensation is $160
Dry Eye patients who have used Cequa in the past United States
60-minute web-assisted phone interview, compensation is $120
Non-Small Cell Lung Cancer patients United States
60-minute web-assisted phone interview, compensation is $150
Generalized Pustular Psoriasis (GPP) patients United States
Year long study, 60-minute, 15-minute, 10-minute, 75-minute web-assisted phone interviews (WATI) (plus homework & online diary) , compensation is $120, $30, $20, $150
Beta Thalassemia (Cooley’s Anemia) (patients who do not receive regular transfusions as part of their medical treatment and must be able to provide proof of diagnosis) United States
60-90 minute web-assisted phone interview, compensation $75 for confirmation of diagnosis + $125 for interview
Chronic inducible urticaria (CIndU) patients and family caregivers United States
60-minute web-assisted phone interview, compensation is $120
Ulcerative Colitis patients United States
60-minute web-assisted phone interview, compensation is $120
Aortic Stenosis patients United States
60-minute web-assisted phone interview, compensation is $120
Alzheimer’s caregivers United States
2 10-minute online surveys that are 7 days apart, compensation $50
Paroxysmal Nocturnal Hemoglobinuria (PNH) patients United States
30-minute online survey, compensation is $60
Anemia patients United States
10-minute online survey, compensation is $25
Neurofibromatosis patients 25+ years and family caregivers of patients 18-25 years United States
60-minute web-assisted phone interview (WATI), compensation is $120
Bladder Cancer patients United States
60-minute web-assisted phone interview (plus a 30-minute homework assignment), compensation is $170
Acute Lymphocytic Leukemia (ALL) patients United States
Year long study, 60-minute web-assisted phone interviews (WATI), compensation is $150 per interview
Progressive Multifocal Leukoencephalopathy (PML) patients United States
60-minute web-assisted phone interview (WATI), compensation is $200
Acute Lymphoblastic Leukemia (ALL) patients United States
(1) 90-minute web-assisted phone interview (WATI) or (2) 45-minute web-assisted phone interviews (WATI), compensation is $150
Small Cell Lung Cancer patients and caregiver United States
30-minute online survey, compensation is a $50 Amazon gift card
Thrombotic microangiopathy (TMA) patients and caregivers United States
15-minute pre-screening phone call (if you qualify then 60-minute web-assisted phone interview (WATI)), compensation is $30 for pre-screening call, $120 for 60-minute WATI
Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) patients United States
45-minute web-assisted phone interview + Confirmation of Diagnosis(COD), compensation $122.50
IgA nephropathy (Berger's Disease) patients United States
20-minute online survey, compensation is $40
Head & Neck Cancer patients United States
60-minute web-assisted phone interview, compensation is $100
Pancreatic Cancer patients United States
60-minute web-assisted phone interview, compensation is $150
Colorectal Cancer patients United States
Two - 60-minute web-assisted phone interviews, compensation is $200
Hepatitis B patients United States
45-minute web-assisted phone interview, compensation is $75
Dwarfism Achondroplasia caregivers United States
30-minute online survey, compensation is $50
Myasthenia Gravis patients United States
5-minute online survey for medical history platform, compensation is $25
Hemophilia A patients United States
This is a 5-minute survey to join a medical history platform, and the compensation is a $200 gift card to be paid by the client (after confirmation of diagnosis through medical records)
Paroxysmal Nocturnal Hemoglobinuria (PNH) patients and caregivers United States
This is a 5-minute survey for a medical history platform and the compensation is a $250 gift card to be paid by the client (after confirmation of diagnosis through medical records)
Alzheimer's Disease patients United States
This is a 5-minute survey for a medical history platform and the compensation is a $25 gift card to be paid by the client (after confirmation of diagnosis through medical records)
Small Cell Lung Cancer patients United States
60-minute web-assisted phone interview, compensation is $100
Clostridium Difficile (C Diff) patients and caregivers United States
Online community; community members can earn gift cards for completing activities; members may also be chosen to complete a 60-minute web-assisted phone interview for a $100 reward
Huntington's Disease patients United States
This is a 5-minute survey for medical history platform and the compensation is a $200 gift card to be paid by the client
Pompe Disease patients United States
5-minute online survey for medical history platform, compensation is $20
Rheumatoid Arthritis or Ulcerative Colitis patients United States
30-minute online survey, compensation is $50
Canada
Sickle Cell Disease (SCD) family caregivers Canada
60-minute web-assisted phone interview (plus a 30-minute homework assignment), compensation is $180
Acute Lymphoblastic Leukemia (ALL) patients Canada
(1) 90-minute web-assisted phone interview (WATI) or (2) 45-minute web-assisted phone interviews (WATI), compensation is $150
France
Generalized Pustular Psoriasis (GPP) Generalized Pustular patients France
In-person clinical trial, compensation and travel expense coverage will be discussed with those that are accepted into the clinical trial
Germany
Chronic Obstructive Pulmonary Disease (COPD) patients and family caregivers Germany
90-minute web-assisted phone interview (patient) / 60-minute web-assisted phone interview (family caregiver), compensation is 175 EUR patients and 115 EUR family caregivers
Generalized Pustular Psoriasis (GPP) Generalized Pustular patients Germany
In-person clinical trial, compensation and travel expense coverage will be discussed with those that are accepted into the clinical trial
Spain
Generalized Pustular Psoriasis (GPP) Generalized Pustular patients Spain
In-person clinical trial, compensation and travel expense coverage will be discussed with those that are accepted into the clinical trial
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?
As of January 1, 2023, you will earn $120 per hour (typically) for participating in new 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 and family caregivers over $13 million dollars since 2013 for participating in research studies.
