What's New at Rare Patient Voice?
Season's Greetings from RPV
The happiest of holidays to you and yours from all of us at Rare Patient Voice! We value you and appreciate your being part of the RPV community.
Your Time Is Valued, Even If You Didn’t Qualify
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, Richard!
Partner Corner
The PNA is an international non-profit organization for patients with pituitary tumors and disorders, their families, loved ones, and the physicians and health care providers who treat them. It was founded in 1992 by a group of acromegalic patients in order to communicate and share their experiences and concerns. The PNA has rapidly grown to become the world’s largest and fastest growing patient advocacy organization devoted to the treatment and cure of pituitary disorders. Visit us at: www.pituitary.org
Staff Spotlight
Hana Salkanovic, who hails from Germany and now resides in Bosnia and Herzegovina, speaks English, Bosnian, and German, and previously worked as an ESL tutor and a freight agent. She is now a Project Manager with Rare Patient Voice, and Hana’s favorite part of her job is the opportunity to make a real difference in the lives of patients and family caregivers.
“I’m passionate about the work we do because it goes beyond just collecting data – it’s about empowering individuals to share their unique experiences and helping to ensure their needs are represented in the development of new treatments. The collaborative and supportive environment at RPV also makes it an enjoyable place to grow professionally while contributing to something meaningful.”
In her spare time, Hana enjoys salsa dancing, collecting vinyl records, cooking, and spending time with her dog, Ari.
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: Adolescents (Ages 16-17) and Parents of Children (Ages 0-17) in the United States
Participate in a 5-minute survey for a medical history platform.
Achondroplasia: Adolescents (Ages 16-17) and Parents of Children (Ages 10-17) in the United States
Join a 120-minute in-person interview. Compensation is $565 to $835.
Acute Kidney Injury (AKI) patients and caregivers United States
60-minute web-assisted phone interview for patients or 90-minute web-assisted phone interview for patients and caregivers together, compensation is $120 for the patient only interview and $180 for the patient and caregiver interview
Amyloidosis: ATTR-CM, Familial ATTR, Wild-Type ATTR patients United States
20-minute online survey, compensation is $40
Amyotrophic Lateral Sclerosis (ALS), Aphasia, Stroke patients and caregivers in San Diego, CA; San Francisco, CA; Phoenix, AZ United States
60-minute in-person interview, compensation is $150/patient and $150/caregiver
Atherosclerotic Cardiovascular Disease (ASCVD), Ischemic Stroke, Myocardial Infarction (MI)/Heart Attack, Peripheral Artery Disease (PAD) patients in the New York Metro area United States
60-minute in-person interview, compensation is $180
Beta Thalassemia (Cooley’s Anemia), Cancer, Eczema (Atopic Dermatitis), Eosinophilic Esophagitis (EOE), Hodgkin's Lymphoma, Inflammatory Bowel Disease (IBD), Rheumatoid Arthritis (RA) caregivers of pediatric patients in Boston, Chicago, Dallas United States
60-minute in-person interview, compensation is $300
Breast Cancer caregivers United States
25-minute online survey, compensation is $50
Breast Cancer patients (stage IV metastatic) United States
25-minute online survey, compensation is $50
Breast Cancer patients and caregivers United States
10-minute in-person survey (to include doctor), compensation is $150
Cancer: Colorectal Cancer, Endometrial Cancer, Gastric/Stomach Cancer, Melanoma, Prostate Cancer patients United States
20-minute online survey, compensation is $40
Cancer Patient Advocates United States
60-minute web-assisted phone interview, compensation is $240
Carriers of X-Linked Chronic Granulomatous Disease (X-CGD) United States
60-minute web-assisted phone interview plus a 15-minute homework assignment, compensation is $120 for the interview and $50 for the homework
Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) patients who have taken Vyvgart United States
60-minute web-assisted phone interview, compensation is $120
Chronic Myeloid (Myelogenous) Leukemia (CML) male patients and caregivers of male patients United States
30-minute online survey, compensation is $60
Chronic Spontaneous Hives patients ages 40 and under United States
20-minute online survey, compensation is $40
Congenital Adrenal Hyperplasia (CAH) patients United States
This is a 5-minute survey for a medical history platform, compensation is a $25 gift card
Congenital Hyperinsulinism (HI) patients United States
60-minute zoom interview, compensation is $120
Diffuse Large B-Cell Lymphoma (DLBCL) patients United States
60-minute web-assisted phone interview, compensation is $120
Diffuse Large B Cell Lymphoma (DLBCL), Follicular Lymphoma, Non-Hodgkin's Lymphoma caregivers United States
20-minute online survey, compensation is $40
Diffuse Large B Cell Lymphoma (DLBCL), Follicular Lymphoma patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120
Dravet Syndrome caregivers United States
Endometrial cancer patients United States
30-minute online survey, compensation is $60
Endometrial Cancer patients United States
90-minute web-assisted phone interview, compensation is $200
Epilepsy caregivers United States
74-minute web-assisted phone interview, compensation is $150
Epilepsy: Cluster Seizures patients or patients prescribed a seizure rescue treatment United States
20-minute online survey, compensation is $40
Epilepsy patients who use VNS United States
15-minute online survey, compensation is $30
Familial Chylomicronemia Syndrome (FCS) patients and caregivers United States
Grave's Disease (GD), Thyroid Eye Disease (TED) patients United States
120-minute in-person interview in New York City, compensation is $360
Grave's Disease, Thyroid Eye Disease (TED) patients and caregivers United States
45-minute web-assisted phone interview, compensation is $90
Head & Neck Cancer patients United States
60-minute focus group, compensation is $120
Hemophilia A & B patients and caregivers United States
30-minute online survey, compensation is $60
Hepatitis C (Hep C) non-Caucasian patients United States
3-year recruit for multiple tasks, compensation is hourly
HIV patients United States
30-minute web-assisted phone interview, compensation is $60
Hypertrophic Obstructive Cardiomyopathy (HOCM) patients United States
Hypochondroplasia caregivers United States
75-minute web-assisted phone interview plus a 30-minute homework assignment, compensation is $250
Idiopathic Pulmonary Fibrosis (IPF), Progressive Fibrosing Interstitial Lung Disease (PF-ILD), patients and caregivers United States
35-minute online survey, compensation is $70
2-week passive metering app, compensation is $300
IgA Nephropathy (Berger’s Disease) patients United States
60-minute web-assisted phone interview, compensation is $120
IgA Nephropathy (Berger's Disease) patients and caregivers United States
Immune Thrombocytopenic Purpura (ITP) patients United States
5-10 minute in-person recording of doctor visit, compensation is $150
Interstitial Lung Disease, Systemic Scleroderma patients United States
90-minute web-assisted phone interview, compensation is $250
Multiple Myeloma patients and caregivers United States
60-75 minute web-assisted phone interview plus 10-minute homework assignment plus 4-hour mobile ethnography, compensation is $120-$175 for the interview (based on length of interview, $25 for the homework assignment and $570 for the mobile ethnography
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
Narcolepsy Type 1 & 2 patients United States
30-minute online survey, compensation is $60
Narcolepsy Type 1 With Cataplexy, Narcolepsy Type 2 Without Cataplexy male patients United States
30-minute online survey, compensation is $60
Paroxysmal Nocturnal Hemoglobinuria patients United States
20-minute online survey, compensation is $40
Primary Biliary Cholangitis (PBC) patients United States
30-minute web-assisted phone interview, compensation is $60
Primary Biliary Cholangitis (PBC) patients United States
20-minute online survey, compensation is $40
Progressive Multifocal Leukoencephalopathy (PML) patients United States
60-minute web-assisted phone interview, compensation is $120
Progressive Multifocal Leukoencephalopathy patients and family caregivers United States
60-minute web-assisted phone interview, 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
Spinal Muscular Atrophy (SMA) caregivers of pediatric patients United States
30-minute online survey, compensation is $60
Spinal Muscular Atrophy (SMA) patients and caregivers United States
30-minute online survey, compensation is $60
Thyroid Eye Disease (TED) male patients United States
45-minute web-assisted phone interview, compensation is $100
Urticaria patients United States
90-minute web-assisted phone interview plus confirmation of diagnosis, compensation is $180 for the interview and $75 for confirmation of diagnosis
Vitiligo patients United States
30-minute online survey, compensation is $60
Wet AMD (nAMD) patients diagnosed within the last 12 months United States
60-minute web-assisted phone interview, compensation is $120
United Kingdom
Colorectal (Colon) Cancer patients United Kingdom
75-minute web-assisted phone interview, compensation is 113 GBP
Eczema (Atopic Dermatitis) male patients United Kingdom
25-minute online survey, compensation is 40 GBP
Glaucoma patients ages 40+ United Kingdom
45-minute web-assisted phone interview, compensation is 70 GBP
Pompe Disease patients and caregivers United Kingdom
15-minute online survey, compensation is 50 GBP
Primary Biliary Cholangitis (PBC) patients United Kingdom
30-minute web-assisted phone interview
Propionic Acidemia (PA) patients and caregivers United Kingdom
60-minute web-assisted phone interview, compensation is 95 GBP
Canada
Paroxysmal Nocturnal Hemoglobinuria (PNH) patients Canada
60-minute online bulletin board, compensation is 120 CAD
Primary Biliary Cholangitis (PBC) patients Canada
30-minute web-assisted phone interview
France
Primary Biliary Cholangitis (PBC) patients France
30-minute web-assisted phone interview
Germany
Primary Biliary Cholangitis (PBC) patients Germany
30-minute web-assisted phone interview
Propionic Acidemia (PA) patients and caregivers Germany
60-minute web-assisted phone interview, compensation is 110 Euros
Italy
Primary Biliary Cholangitis (PBC) patients Italy
30-minute web-assisted phone interview
Spain
Primary Biliary Cholangitis (PBC) patients Spain
30-minute web-assisted phone interview
Australia
Eczema, Psoriatic Arthritis, Rheumatoid Arthritis patients Australia
Two 2-hour virtual sessions plus two 30-minute calls, compensation is 500 AUS
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 (typically) per hour 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.
