What's New at Rare Patient Voice?
Survey Results
How can caring for a loved one living with a rare disease impact one’s life? Rare Patient Voice conducted a survey of 735 family caregivers (loved ones helping with patient 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.
Full survey results can be downloaded here. The following are some eye-opening takeaways:
- Rare caregivers are overwhelmingly female, most middle-aged, with many caring for their children.
- Their lives are significantly impacted by their role as caregiver, largely not for the best, particularly in terms of career opportunities, finances, and the emotional impact.
- The time commitment of caregiving is noted as having the greatest effect on their family life.
- There are many ways rare caregivers' lives can be improved, with financial assistance emerging as the most commonly mentioned.
Your Time Is Valued, Even If You Didn’t Qualify
We always appreciate your time 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, Abigail M!
Partner Corner
Aortic Hope (501c3 Charity) serves a community of patients, survivors, and caregivers living with an aortic disease. The organization's goals are to Spread Hope, Create Awareness, and Provide Support during the recovery and management of aortic disease.
Aortic Hope is a community created by survivors and caregivers of aortic disease. They spread hope, create awareness, and provide support during the recovery and management of aortic disease. They offer a variety of initiatives, including private online support groups, interactive live interviews with clinicians on their AHTV YouTube channel, educational resources such as Aortic Dissection: The Patient Guide, and more.
Website: https://www.aortichope.org/
Staff Spotlight
Born, raised, and residing to this day in Sarajevo, Bosnia and Herzegovina, Tana Karamustafić joined Rare Patient Voice in 2021 as a Project Manager. Tana volunteered through high school with humanitarian organizations, as her wish is to contribute and help everyone in her environment as much as possible. Providing quality customer service and being a team player are key to her role at RPV.
“What makes me most proud to work at RPV is the opportunity to support patients and ensure they feel heard and understood. I also really value communicating with clients and building connections. On top of that, being part of such a supportive and friendly team makes the day-to-day really enjoyable.”
A warm weather fan, in her off hours Tana enjoys walking and spending time with her family and friends as well as her cat, Tiger.
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 and up to $90 per year for caregivers who complete brief surveys about their child's health
Acromegaly patients United States
20-minute online survey, compensation is $40
Alpha-Mannosidosis (AM) caregivers United States
Compensation is $125
Alzheimer's Disease (AD): Dementia caregivers United States
90-minute web-assisted phone interview plus a 60-minute follow-up web-assisted phone interview (confirmation of diagnosis required), compensation is $160 for the initial interview + $110 for the follow-up interview + $50 for confirmation of diagnosis
Alzheimer's Disease (AD), Cognitive Impairment (CI) patients United States
60-minute web-assisted phone interview, compensation is $250
Amyloidosis: ATTR-CM patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120
Anemia, Coronavirus (COVID-19): Long Hauler, Lupus: Lupus Nephritis (LN), Lupus: Systemic Lupus Erythematosus (SLE) caregivers of patients ages 12-17 and patients ages 16-17 in Connecticut, Illinois, Indiana, New Jersey, New York, Texas, and Wisconsin United States
In-person interviews, compensation is $250 for the caregiver and $350 for the adolescent patient
Atrial Fibrillation (AFIB) patients ages 50+ United States
60-minute web-assisted phone interview, compensation is $120
Bladder Cancer patients United States
20-minute online survey, compensation is $40
Bladder Cancer patients United States
60-minute web-assisted phone interview, compensation is $120
Bladder Cancer patients in the Connecticut; Delaware; Maine; Massachusetts; Philadelphia, PA/NJ; New York; Rhode Island areas United States
90-minute in-person interview, compensation is $165
Bladder Cancer patients and caregivers United States
30-minute online survey, compensation is $60
Breast Cancer (BC) patients United States
30-minute web-assisted phone interview, compensation is $60
Breast Cancer (BC) patients United States
30 to 60-minute initial web-assisted phone interview with potential for follow-up video opportunities, compensation is $120 for the interview
Bronchiectasis, Mycobacterium Avium Complex (MAC), Nontuberculous Mycobacterial (NTM) United States
Cervical Cancer, Endometrial Cancer, Lung Cancer: Non-Small Cell Lung Cancer (NSCLC), Stomach (Gastric) Cancer patients United States
45-minute web-assisted phone interview, compensation is $90
Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), Myasthenia Gravis (MG) patients United States
30-minute online survey, compensation is $60
Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) patients United States
30-minute online survey, compensation is $60
Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) patients United States
medical record service sign up, compensation is $75 for the initial signup
Chronic Pain, Epilepsy, Essential Tremor, Parkinson's Disease patients (who have received a deep brain stimulator, dorsal root ganglion stimulator, or spinal cord stimulator and used a mobile app to allow a doctor to remotely adjust the settings of their implant during a telehealth visit) and caregivers United States
60-minute web-assisted phone interview, compensation is $120
Colorectal (Colon) Cancer patients United States
30-minute online survey, compensation is $60
Colorectal (Colon) Cancer patients United States
30-minute online survey, compensation is $60
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 (CD) patients United States
3-year video shoot project, compensation varies based on involvement
Cutaneous Lichen Planus patients United States
60-minute web-assisted phone interview, compensation is $167
Endometrial Cancer patients United States
90-minute web-assisted phone interview, compensation is $200
Epilepsy: Dravet Syndrome (DS) caregivers United States
60-minute web-assisted phone interview, compensation is $120
Friedreich's Ataxia (FA) patients United States
Type of interview varies, compensation based on involvement/type of interview
Giant Cell Arteritis (GCA) patients United States
30 to 60-minute initial web-assisted phone interview with potential for follow-up video opportunities, compensation is $120 for the interview
Heart Disease: Pericarditis patients United States
60-minute web-assisted phone interview plus a possible 40-minute follow-up interview, compensation is $120 (60-minute interview) and $80 (40-minute interview)
Heart Disease: Heart Attack (MI), Stroke patients United States
30 to 60-minute initial web-assisted phone interview with potential for follow-up video opportunities, compensation is $120 for the interview
Hemophilia A patient under age 70 United States
Preliminary interview with the possibility for a 3-year long opportunity with various participation options, compensation is $120/hour
Hemophilia adult patients & adolescent patient/caregiver duos & caregivers of adults United States
In-person interviews (locations TBD), compensation is $200
Hepatitis: Hepatitis B (Hep B) patients United States
60-minute web-assisted phone interview, compensation is $120
Hepatitis: Hepatitis B (Hep B) patients United States
45-minute web-assisted phone interview, compensation is $90
Hepatitis: Hepatitis B (Hep B)/(HBV), Hepatitis: D (Virus/HDV) patients United States
60-minute web-assisted phone interview, compensation is $120
Hepatitis: Hepatitis C (Hep C) Non-Caucasian male or female patients ages 18-55 United States
Preliminary interview with the possibility for a 3-year long opportunity with various participation options, compensation is $100/hour
Hepatitis: Hepatitis C (Hep C) patients United States
20-minute online survey, compensation is $40
Hypophosphatasia (HPP) caregivers United States
Hypophosphatasia (HPP) patients United States
20-minute pre-interview online survey plus in-home interview (up to an hour), compensation is $40 for the survey and $180 for the in-home interview
Hypophosphatasia (HPP), Rickets (Osteomalacia), X-Linked Hypophosphatemia (XLH) patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120
Interstitial Lung Disease (ILD), Pulmonary Arterial Hypertension (PAH), Pulmonary Fibrosis (PF) patients currently using Tyvaso DPI and caregivers United States
30-minute interview with the possibility of a 1 - 3.5 hour video creation opportunity, compensation is $50 for the initial interview and $100/hour for the video opportunity
IgA Nephropathy (Berger's Disease) patients and caregivers United States
Kidney Disease: Chronic Kidney Disease (CKD), Kidney Disease: Complement-3 Glomerulopathy, Kidney Disease: Focal Segmental Glomerulosclerosis (FSGS), Kidney Disease: Glomerulonephritis, Kidney Disease: IgA Nephropathy (Berger's Disease), Lipoid Nephrosis (Minimal Change Disease), Kidney Disease: Nephrotic Syndrome caregivers of patients ages 12-17 and patients ages 16-17 in Connecticut, Illinois, Indiana, New Jersey, New York, Texas, and Wisconsin United States
In-person interviews, compensation is $250 for the caregiver and $350 for the adolescent patient
Kidney Disease: Chronic Kidney Disease (CKD)-late stage patients United States
25-minute online survey, compensation is $50
Kidney Disease: Complement-3 Glomerulopathy (C3G) patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120
Kidney Disease: IgA Nephropathy (Berger's Disease) patients United States
60-minute web-assisted phone interview plus a homework assignment, compensation is $120 for the interview and $30 for the homework assignment
Kidney Disease: IgA Nephropathy (Berger's Disease) patients United States
90-minute web-assisted phone interview, compensation is $150
Leukemia: Chronic Lymphocytic Leukemia (CLL) patients and caregivers United States
25-minute online interview, compensation is $50
Leukemia: Chronic Lymphocytic Leukemia (CLL) patients United States
60-minute web-assisted phone interview, compensation is $100
Limited Cutaneous Systemic Sclerosis (lcSSc) patients United States
70-minute web-assisted phone interview, compensation is $145
Lung Cancer: Lung Adenocarcinoma, Lung Cancer: Non-Small Cell Lung Cancer (NSCLC) patients United States
60-minute web-assisted phone interview, compensation is $120
Lung Cancer: Non-Small Cell Lung Cancer (NSCLC) patients United States
20-minute online survey, compensation is $40
Lung Cancer: Non-Small Cell Lung Cancer (NSCLC) patients United States
20-minute online survey, compensation is $40
Lung Cancer: Small Cell Lung Cancer patients United States
Lupus: Systemic Lupus Erythematosus (SLE) non-Caucasian patients United States
30-mintue online survey, compensation is $60
Multiple Myeloma (MM) patients United States
20-minute online survey, compensation is $40
Multiple Myeloma (MM) patients and caregivers United States
20-minute online survey, compensation is $40
Multiple Myeloma (MM) patients United States
30-minute web-assisted phone interview with potential for follow-up video opportunities, compensation is $60 for the 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
20-minute online survey, compensation is $40
Multiple Sclerosis (MS): Relapsing Remitting MS (RRMS), Multiple Sclerosis (MS): Secondary Progressive MS (SPMS) caregivers United States
25-minute online survey, compensation is $50
Myelofibrosis (MF) patients United States
25-minute online survey, compensation is $50
Myelofibrosis patients United States
Year long advisory boards (4 sessions), compensation is $150
Narcolepsy: Type 1 With Cataplexy patients United States
35-minute online survey, compensation is $70
Neuroendocrine Cancer (NET): Gastroenteropancreatic Neuroendocrine Tumors (GEP-NETs) patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120
Non-Clear Cell Renal Cell Carcinoma (Kidney Cancer, RCC) patients United States
60-minute web-assisted phone interview, compensation is $120
Non-Hodgkin's Lymphoma (NHL): Diffuse Large B Cell Lymphoma (DLBCL) patients United States
10-minute online survey, compensation is $25
Obstructive Hypertrophic Cardiomyopathy (oHCM) patients and caregivers United States
Osteoporosis Hispanic patients ages 55 and older United States
Preliminary interview with the possibility for a 3-year long opportunity with various participation options, compensation is $120/hour
Ovarian Cancer patients (stages III or IV) United States
25-minute online survey, compensation is $50
Parkinson's Disease (PD) patients United States
30-minute online survey, compensation is $60
Paroxysmal Nocturnal Hemoglobinuria (PNH) patients United States
60-minute web-assisted phone interview plus a 15-minute homework assignment, compensation is $250
Paroxysmal Nocturnal Hemoglobinuria (PNH) patients United States
40-minute online survey, compensation is $150
Pediatric Low-Grade Glioma (pLGG) caregivers of recently diagnosed patients ages 1-17 United States
60-minute web-assisted phone interview, compensation is $120
Phenylketonuria (PKU) patients ages 12-17 and caregivers of patients United States
30-minute training session plus 90-minute in-person interview over 2 days April 28th-June 8th, compensation is $525 plus travel incentives if applicable.
Platinum Resistant Ovarian Cancer patients United States
60-minute web-assisted phone interview, compensation is $120
Prostate Cancer patients United States
20-minute online survey, compensation is $40
Prostate Cancer patients United States
30-minute web-assisted phone interview with potential for follow-up video opportunities, compensation is $60 for the interview
Psoriasis: Generalized Pustular Psoriasis (GPP) patients United States
Advisory board in Dallas, TX, compensation is $95 per hour plus travel accommodations
Psoriasis (PSO), Psoriatic Arthritis (PsA) patients United States
30-minute web-assisted phone interview with potential for follow-up video opportunities, compensation is $60 for the interview
Rheumatoid Arthritis (RA) patients United States
30-minute online survey, compensation is $50
Rheumatoid Arthritis (RA) patients United States
30 to 60-minute initial web-assisted phone interview with potential for follow-up video opportunities, compensation is $120 for the interview
Schizophrenia patients United States
30-minute online survey, compensation is $60
Sjogren's Syndrome (SjS, SS) caregivers United States
60-minute web-assisted phone interview plus a 15-minute journal, compensation is $150
Sjogren's Syndrome (SjS, SS) male patients United States
30-minute online survey, compensation is $60
Stomach (Gastric) Cancer patients and caregivers United States
30-minute pre-work assignment plus a 60-minute web-assisted phone interview, compensation is $60 for the pre-work assignment and $120 for the interview
Ulcerative Colitis patients United States
30-minute online survey, compensation is $50
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
Vision Impairment: Retinitis Pigmentosa patients United States
60-minute web-assisted phone interview, compensation is $120
Vision Impairment: Stargardt Disease patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120
Warm Autoimmune Hemolytic Anemia (WAIHA) patients United States
30-minute voice response survey, compensation is a $60 Amazon gift card
Canada
Amyloidosis: ATTR-CM patients Canada
60-minute web-assisted phone interview, compensation is $120 USD
Phenylketonuria (PKU) patients and caregivers Canada
60-minute web-assisted phone interview, compensation is $60 USD
Psoriasis (PsO) patients Canada
25-minute online survey, compensation is 77 CAD
United Kingdom
Amyloidosis: ATTR-CM patients United Kingdom
Bladder Cancer (BC), Colorectal (Colon) Cancer, Stomach (Gastric) patients United Kingdom
30-minute prework assignment + 60-minute web-assisted phone interview + confirmation of diagnosis, compensation is 50 GBP (prework assignment), 150 GBP (web-assisted phone interview), and 25 GBP (Confirmation of Diagnosis)
Breast Cancer (BC), Cervical Cancer, Ovarian Cancer patients United Kingdom
30-minute prework assignment + 60-minute web-assisted phone interview + confirmation of diagnosis, compensation is 50 GBP (prework assignment), 150 GBP (web-assisted phone interview), and 25 GBP (Confirmation of Diagnosis)
Cutaneous Lichen Planus patients United Kingdom
60-minute web-assisted phone interview, compensation is $125 GBP
Diabetes (DM): Type 1 patients United Kingdom
45-minute web-assisted phone interview, compensation is 100 GBP
Eczema (Atopic Dermatitis) male patients United Kingdom
25-minute online survey, compensation is 40 GBP
Extrapulmonary Neuroendocrine Carcinoma (EP-NEC), Pancreatic Cancer, Stomach (Gastric) patients United Kingdom
30-minute prework assignment + 60-minute web-assisted phone interview + confirmation of diagnosis, compensation is 50 GBP (prework assignment), 150 GBP (web-assisted phone interview), and 25 GBP (Confirmation of Diagnosis)
Hereditary Angioedema (HAE) patients United Kingdom
45-minute web-assisted phone interview or 30-minute online survey, compensation is 70 GBP for the interview and 50 GBP for the survey
Myopathy, Thyroid Eye Disease (TED) patients United Kingdom
60-minute web-assisted phone interview, compensation is 120 GBP
Pompe Disease patients and caregivers United Kingdom
15-minute online survey, compensation is 50 GBP
Propionic Acidemia (PA) patients and caregivers United Kingdom
60-minute web-assisted phone interview, compensation is 95 GBP
Prostate Cancer patients patients United Kingdom
30-minute prework assignment + 60-minute web-assisted phone interview + confirmation of diagnosis, compensation is 50 GBP (prework assignment), 150 GBP (web-assisted phone interview), and 25 GBP (Confirmation of Diagnosis)
France
Amyloidosis: ATTR-CM patients France
Bladder Cancer patients and caregivers France
45-minute web-assisted phone interview, compensation is 85 Euros
Germany
Bladder Cancer patients and caregivers Germany
45-minute web-assisted phone interview, compensation is 85 Euros
Hearing Loss, Loss of Mobility, Vision Impairment patients Germany
60-minute web-assisted phone interview (conducted in German), compensation is 110 Euros
Myopathy, Thyroid Eye Disease (TED) patients Germany
60-minute web-assisted phone interview, compensation is 80 Euros
Propionic Acidemia (PA) patients and caregivers Germany
60-minute web-assisted phone interview, compensation is 110 Euros
Italy
Bladder Cancer (BC), Colorectal (Colon) Cancer, Stomach (Gastric) Cancer patients Italy
30-minute prework assignment + 60-minute web-assisted phone interview + confirmation of diagnosis, compensation is 30 Euros (prework assignment), 120 Euros (web-assisted phone interview), and 30 Euros (Confirmation of Diagnosis)
Breast Cancer (BC), Cervical Cancer, Ovarian Cancer patients Italy
30-minute prework assignment + 60-minute web-assisted phone interview + confirmation of diagnosis, compensation is 30 Euros (prework assignment), 120 Euros (web-assisted phone interview), and 30 Euros (Confirmation of Diagnosis)
Extrapulmonary Neuroendocrine Carcinoma (EP-NEC), Pancreatic Cancer patients Italy
30-minute prework assignment + 60-minute web-assisted phone interview + confirmation of diagnosis, compensation is 30 Euros (prework assignment), 120 Euros (web-assisted phone interview), and 30 Euros (Confirmation of Diagnosis)
Prostate Cancer patients Italy
30-minute prework assignment + 60-minute web-assisted phone interview + confirmation of diagnosis, compensation is 30 Euros (prework assignment), 120 Euros (web-assisted phone interview), and 30 Euros (Confirmation of Diagnosis)
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 $15 million dollars since 2013 for participating in research studies.
