What's New at Rare Patient Voice?
Study Results
Earlier this year, we conducted a survey of 1,197 members of the RPV community impacted by neurodiversity regarding their experiences in the workplace. The results were eye-opening. We recently exhibited at the 61st Annual Learning Disabilities Association of America (LDA) International Conference in Orlando, FL, where Pam Cusick shared the survey findings in a multimedia presentation, "Working Smarter Together: The Impact of Accommodations in Business and the Neurodiverse Community.” The presentation in its entirety is now available for download on the RPV website.
Didn’t Qualify for a Study? We Still Value Your Time
We appreciate your participation and being part of the RPV community, even if you didn'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, Samantha!
Partner Corner
Our nonprofit, Nutcracker Research Foundation, helps people suffering from a rare kidney syndrome. The syndrome causes daily pain in the back and flank regions, among various other symptoms. Patients go through a wide range of procedures and tests to confirm the syndrome. It's very stressful and difficult for these individuals to go through. There isn't one surgery that cures everything, so there is a long journey that we help patients navigate. For more information, visit us on Facebook: https://www.facebook.com/NutcrackerResearchFoundation/
Share Your Voice and Receive a $10 Gift Card
If you’re part of the RPV community and enjoy participating in research studies, let us know! Join 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 $10 Amazon gift card! Follow these steps to record and submit your own video!
Step 1: Scan the 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!
Referrals
Would you be interested in becoming a valued referral partner by promoting Rare Patient Voice and encouraging others to participate in research? As a referral partner, you play a pivotal role in recruiting patients and family caregivers to participate in all types of research studies. For each successful referral who signs up through your referral link, you will be eligible to receive compensation of $10 USD. Click here for more information and to sign up to be an RPV referral partner.
Staff Spotlight
Jessica Bolden joined Rare Patient Voice as a Business Development Associate in 2022. This role allows her to join her customer service skills with her previous administrative and sales background. As a member of the sales team, Jessica works with clients and helps them consider how RPV may fit into their pending projects and studies. There are a number of things she enjoys about working for Rare Patient Voice, including the high level of teamwork and support exhibited within the organization.
“One major thing I appreciate would be my co-workers. I see the way we step in and help each other across departments and the hard work everyone is putting in for RPV day after day.”
In her off hours, Jessica enjoys warm weather and soaking up the sun, and would one day like to take an RV road trip around the US.
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
Achondroplasia adolescent patients and caregivers United States
This is a 5-minute survey for a medical history platform.
Alcoholism, Liver Disease (not hepatitis), Organ Transplant: Liver patients United States
60-minute web-assisted phone interview, compensation is $120
Alzheimer's Male Caregivers United States
90-minute web-assisted phone interview + confirmation of diagnosis, compensation is $160 for the interview and $50 for confirmation of diagnosis
Amyloidosis: Hereditary (hTTR) patients and caregivers United States
240-minute online community, compensation is $480
Ankylosing Spondylitis male patients United States
30-minute online survey, compensation is $60
Autosomal Dominant Polycystic Kidney Disease (ADPKD) or Chronic Kidney Disease (CKD) patients United States
4 week passive metering app, compensation is $120
Bladder Cancer patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120
Breast Cancer-Stage IV patients United States
2 Week Passive App Tracking, compensation is $60
Chronic Kidney Disease (CKD)/End Stage Renal Disease (ESRD, Kidney Failure) In-Home Hemodialysis patients United States
60-minute web-assisted phone interview, compensation is $120
Chronic Kidney Disease (CKD) or End-Stage Renal Disease (ESRD) patients, caregivers, or patient advocacy group employees United States
60-minute web-assisted phone interview plus a 15-minute homework assignment, compensation is $120 for the interview and $30 for the homework assignment
Chronic Lymphocytic Leukemia (CLL), Diffuse Large B Cell Lymphoma (DLBCL), or Multiple Myeloma (MM) patients and caregivers United States
30-minute web-assisted phone interview, compensation is $60
Chronic Myeloid (Myelogenous) Leukemia patients United States
30-minute online survey, compensation is $60
Chronic Urticaria patients United States
90-minute web-assisted phone interview (WATI) + COD (confirmation of diagnosis), $175 (interview) and $75 (POC-proof of confirmation)
Colorectal (Colon) Cancer, Melanoma, Non-Small Cell Lung Cancer (NSCLC), or Thyroid Cancer stage IV patients who have been on 2L+ of therapy United States
60-minute web-assisted phone interview, compensation is $100
Congenital Adrenal Hyperplasia (CAH) patients United States
This is a 5-minute survey for a medical history platform, compensation is a $25 gift card
Crohn's Disease Male Non-Caucasian Patients United States
90-minute web-assisted phone interview, compensation is $175 ($150 for the interview and $25 for confirmation of diagnosis)
Diffuse B Cell Lymphoma OR Follicular Lymphoma patients and caregivers United States
60-minute web-assisted phone interview plus a 15-minute pretask, compensation is $200
Epilepsy: Infantile Spasms (IS) or Tuberous Sclerosis (TSC) Caregivers of children ages 0-8 who have used the following medications within the last 4 years on a child: SABRIL Powder for Oral Solution, Vigabatrin Powder for Oral Solution, or Vigadrone Powder for Oral Solution in the Chicago, Boston, New York City, or Miami Metro areas United States
120-minute in person interview, compensation is $360
Fragile X-Associated Tremor/Ataxia Syndrome (FXTAS) patients United States
60-minute web-assisted phone interview (WATI), compensation is $120
Gastric or Stomach Cancer patients United States
90-minute focus group, compensation is $150
Hemophilia A patients (currently using Hemlibra) and caregivers United States
60-minute in-person interview, compensation is $180
Hodgkins Lymphoma patients United States
60-minute web-assisted phone interview, compensation is $120
Idiopathic Inflammatory Myopathies (IIMs) with one of the subtypes: Anti-Synthetase Syndrome (ASyS), Dermatomyositis (DM), or Immune-Mediated Necrotizing Myopathy (IMNM) patients (age 18+) United States
90-minute web-assisted phone interview, compensation is $165 for the interview + $25 for full screening
IgA Nephropathy (Berger'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
Idiopathic Pulmonary Fibrosis (IPF) patients United States
25-minute online survey, compensation is $50
IgG 4 related disease (IgG4-RD) patients United States
60-minute web-assisted phone interview (WATI) and 60-minute focus group, compensation is $240
Juvenile Idiopathic Arthritis (JIA) caregivers of children in New York, NY; Atlanta, GA; Raleigh, NC; Chicago, IL; and Philadelphia, PA United States
60-minute in-person interview, compensation is $500
Kidney Disease: End Stage Renal Disease (ESRD, Kidney Failure) Spanish speaking patients United States
60-minute web-assisted phone interview, compensation is $120
Kidney Disease: Immune Complex-Mediated Membranoproliferative Glomerulonephritis (IC-MPGN, ICGN, Ig-MPGN) patients & caregivers United States United States
60-minute web-assisted phone interview, compensation is $120
Leukemia or Non-Hodgkin's Lymphoma (NHL) with Cytokine Release Syndrome patients United States
60-minute web-assisted phone interview, compensation is $150
Melanoma, Non-Small Cell Lung Cancer (NSCLC) patients United States
25 minute online survey, compensation is $50
Multiple Myeloma patients or caregivers United States
20-minute online survey, compensation is $40
Multiple Sclerosis (MS) Patients who speak Spanish United States
20 minute online survey, compensation is $40
Non-Small Cell Lung Cancer (NSCLC) patients and caregivers United States
40-minute online survey, compensation is $80
Opioid Addiction patients ages 18+ United States
60-minute web-assisted phone interview, compensation is $120
Organic Acidemia (OA): Methylmalonic Acidemia (MMA) & Propionic Acidemia (PA) patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120
Ornithine Transcarbamylase Deficiency (OTC) patients & caregivers United States
60-minute web-assisted phone interview, compensation is $180
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)
Pediatric Bone Marrow Transplant (BMT) (Stem Cell Transplant) caregivers for patients under age 18 United States
60-minute web-assisted phone interview, compensation is $120
Prostate Cancer patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120
Psoriatic Arthritis (PsA) non-caucasian patients United States
60-minute focus group, compensation is $120
Pulmonary Arterial Hypertension (PAH) patients United States
30-minute online survey, compensation is $60
Rheumatoid Arthritis or Ulcerative Colitis patients United States
30-minute online survey, compensation is $50
Synovial Sarcoma patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120
Vanishing White Matter Disease caregivers United States
45-minute web-assisted phone interview plus a 15-minute pre-task assignment, compensation is $90 for the interview and $30 for the pre-task assignment
Vasculitis, Wegener's Granulomatosis With Polyangiitis (GPA) patients United States
120-minute focus group, compensation is $240
United Kingdom
Alcoholism, Liver Disease (not hepatitis), Organ Transplant: Liver patients United Kingdom
60-minute web-assisted phone interview, compensation is 100 GBP
Primary Sjogren’s Syndrome patients United Kingdom
Two 60-minute web-assisted phone interviews (120-minute total) plus confirmation of diagnosis, compensation is 200 GBP for the interview and 40 GBP for confirmation of diagnosis
Vasculitis, Wegener's Granulomatosis With Polyangiitis (GPA) patients United Kingdom
90-minute web-assisted phone interview, compensation is 90GBP
Canada
Addiction male patients Canada
90-minute web-assisted phone interview, compensation is 200 CAD
Hereditary Angioedema patients ages 12+ and caregivers Canada
90-minute virtual interview, compensation is $202 CAD
Spain
Achondroplasia patients and caregivers Spain
60-minute web-assisted phone interview, compensation is 110 EUR
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 $120 per hour (typically) for participating in studies. We pay by check to ensure patients/family caregivers can use their compensation in any way they wish, and now provide the option for patients/family caregivers to sign up for electronic payments.
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.
