What's New at Rare Patient Voice?
Study Results
In December 2023, Rare Patient Voice conducted a survey of 735 family caregivers (loved ones helping with care) of people living with rare diseases in the United States. Questions pertained to how being a caregiver has impacted them emotionally, financially, and in terms of their career, education, family life, and relationship with medical professionals. The results of the study highlight how greatly the lives of rare disease caregivers can be affected, and unfortunately, in largely negative ways.
In the survey, we asked “How has being the caregiver of a loved one with a rare disease affected you emotionally?” The most common answers to this question illustrate the toll being a rare caregiver can take on one’s life. They were:
- Anxiety
- Caregiver burnout
- Emotional distress
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, Megan!
Partner Corner
Adrenal Insufficiency United (AIU) is dedicated to supporting individuals and caregivers affected by adrenal insufficiency; empowering them with education, resources, community building, and legislative advocacy. Visit us at: https://aiunited.org/
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
Molly Mackey joined Rare Patient Voice in 2022 and currently works for the company as an Assistant Project Manager. She graduated in 1999 from the University of North Alabama, earning a BBA in Finance and Economics as well as playing one year of collegiate tennis. Molly is proud of how RPV empowers others to have their voices heard.
“I love that Rare Patient Voice gives patients, family caregivers, and advocates an opportunity to share their individual stories, not only by participating in research but also through our website, social media platforms, and community. Being able to see and hear someone else’s story lets others know that they are not alone!”
In her spare time, Molly loves spending time with her family, cooking, and Alabama football.
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.
Alopecia Areata (AA) patients or caregivers United States
20-minute online survey, compensation is $40
Bladder Cancer patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120
Breast Cancer patients United States
25-minute online survey, compensation is $50
Cancer African American or Hispanic patients or caregivers in the Seattle, WA area United States
3-hour in-person interview or possible 90-minute zoom interview, compensation is $275 for the in-person interview/$150 for the zoom interview
Cancer: Waldenstrom's Macroglobulinemia (WM), Ovarian Cancer, Fallopian Tube Cancer, Primary Peritoneal Cancer (PPC), Urothelial Carcinoma (Bladder Cancer, aka-Transitional Cell Carcinoma-(TCC)) patients and caregivers United States
20-minute online survey, compensation is $40
Catheter User patients in the Philadelphia, PA area United States
90-minute in-person interview, compensation is $270
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)
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)
Depression patients with experience with Rexulti (Brexpiprazole) or Vraylar (Cariprazine) United States
75-minute web-assisted phone interview plus a pretask app to download, compensation is $300 ($150 for the interview and $150 for the pretask app)
Diabetes: Type 2 male patients United States
20-minute online survey, compensation is $40
Eosinophilic Esophagitis (EOE) patients or caregivers United States
20-minute online survey, compensation is $40
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
Heart Disease and Atherosclerosis patients United States
60-minute web-assisted phone interview, compensation is $120
Hemophilia A patients (currently using Hemlibra) and caregivers United States
60-minute in-person interview, compensation is $180
Hemophilia A & B patients and caregivers United States
2-hour web-assisted phone interview, compensation is $425
Hemophilia A or Hemophilia B patients or caregivers United States
20-minute online survey, compensation is $40
Hidradenitis Suppurativa (HS) patients or caregivers United States
20-minute online survey, compensation is $40
Hypereosinophilic Syndrome (HES) patients or caregivers United States
20-minute online survey, compensation is $40
Idiopathic Pulmonary Fibrosis (IPF) patients United States
25-minute online survey, compensation is $50
IgA Nephropathy (Berger's Disease) patients United States
60-minute webcam interview, compensation is $125
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
Juvenile Idiopathic Arthritis (JIA) patients or caregivers United States
20-minute online survey, compensation is $40
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
Kidney Transplant patients 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
Liver Disease: NASH or Non-Alcoholic Fatty Liver Disease (NAFLD) non-caucasian patients United States
30-minute online survey, compensation is $60
Lung Cancer: Non-Small Cell Lung Cancer (NSCLC)-Stage IV patients United States
60-minute web-assisted phone interview, compensation is $120
Multiple Myeloma patients United States
30-minute online survey, compensation is $60
Multiple Myeloma patients and caregivers United States
60-minute web-assisted phone interview (patient) or 90-minute web-assisted phone interview (patient & caregiver), compensation is $120 (patient interview) and $180 (patient/caregiver interview)
Multiple Sclerosis: Clinically Isolated Syndrome (CIS), Relapsing Remitting MS (RRMS), Secondary Progressive MS (SPMS) patients ages 18-65 not living in Vermont United States
25-minute online survey, compensation is $50
Multiple Sclerosis patients United States
35-minute online survey, compensation is $70
Multiple Sclerosis (MS): Relapsing Remitting MS (RRMS) patients or caregivers United States
20-minute online survey, compensation is $40
Non-Small Cell Lung Cancer (NSCLC) patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120
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
Opioid Addiction patients ages 18+ United States
60-minute web-assisted phone interview, compensation is $120
Osteogenesis Imperfecta caregivers of adolescent children ages 15-17 United States
60-minute web-assisted phone interview, compensation is $75
Pemphigus Vulgaris (PV) patients or caregivers United States
20-minute online survey, compensation is $40
Phenylketonuria caregivers of adolescent children ages 12-17 United States
Online survey-up to 60 minutes, compensation is $65
Pyruvate Kinase Deficiency caregivers of patients ages 8-17 United States
60-minute web-assisted phone interview (patients answer questions, caregivers will present), compensation is $190
Rheumatoid Arthritis or Ulcerative Colitis patients United States
30-minute online survey, compensation is $50
Rhinosinusitis patients or caregivers United States
20-minute online survey, compensation is $40
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 patients United States
60-minute online survey, compensation is $125
Vasculitis, Wegener's Granulomatosis With Polyangiitis (GPA) patients United States
120-minute focus group, compensation is $240
Wegener’s Granulomatosis With Polyangitis (GPA) patients or caregivers United States
20-minute online survey, compensation is $40
United Kingdom
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
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.
