What's New at Rare Patient Voice?
Study Results
Late last year, RPV conducted a survey of 735 family caregivers of people living with rare diseases in the United States. Questions included how being a rare caregiver has impacted them emotionally, financially, and in terms of their career, education, family life, and relationship with medical professionals. While the full study results will be presented at the Rare Disease Summit in Philadelphia next month, here is a sneak peek at a particularly interesting point that emerged.
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, Alex!
Partner Corner
The MAGIC Foundation is a charitable non-profit organization created to provide support services for the families of children afflicted with a wide variety of chronic and/or critical disorders, syndromes and diseases that affect a child's growth. The MAGIC Foundation's mission is to reduce the emotional and physical trauma caused by growth disorders, resulting in healthier, happier children and consequently, adults. Our Motto: Children have a short time to grow and a lifetime to live with the results! Together we are MAGIC! Learn more: https://www.magicfoundation.org/
Staff Spotlight
Get to know our team! This month, meet Brooke Neal, Patient Advocacy Associate for Rare Patient Voice.
Brooke first joined Rare Patient Voice in 2020 as a Data Specialist and Outreach Associate, and is now a Patient Advocacy Associate. She is a mom to Bexton, who was born with a rare condition called Pierre Robin Sequence. Brooke often attends patient and family caregiver events and loves to meet fellow moms in the rare community. She connects with others with a level of understanding and empathy, knowing firsthand the struggle it is to care for a loved one with medical complexity.
“The thing that makes me the most proud about working at RPV is seeing that we're making an actual difference in the lives of patients and family caregivers by helping to improve medical research.”
Brooke’s interests include creating epoxy tumblers, reading, and going to the beach with her family.
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
Atopic Dermatitis caregivers of patients under age 12 United States
60-minute web-assisted phone interview, compensation is $120
Bone Marrow Transplant, Collagen Vascular Disease, Graft Versus Host Disease (GVHD), Organ Transplant or Systemic Sclerosis (Scleroderma) patients and caregivers United States
60-minute web-assisted phone interview (WATI), compensation is $120
Breast Cancer-Stage IV patients United States
2 Week Passive App Tracking, compensation is $60
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 Lymphocytic Leukemia (CLL) or Mantle Cell Leukemia (MCL) patients United States
4-hour virtual focus group via Zoom, compensation is $480
Chronic Lymphocytic Leukemia (CLL) patients and caregivers United States
2 week passive app tracking, 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)
Demodex Blepharitis patients United States
45-minute online survey, compensation is $90
Diabetic Macular Edema (DME) or Retinal Vein Occlusion (RVO) patients in the Chicago (1/31-2/2), New Jersey, or New York areas United States
2.5 hour in-home/in-person interview plus a 30-minute homework assignment, compensation is $450 for the interview and $50 for the homework assignment
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
Endometrial Cancer patients United States
60-minute web-assisted phone interview, compensation is $120
Epidermolysis Bullosa (EB) patients and caregivers United States
60-minute web-assisted phone interview, compensation is $150
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
Hemophilia A patients (currently using Hemlibra) and caregivers United States
60-minute in-person interview, compensation is $180
Hepatocellular carcinoma (HCC) Patients United States
60-minute web-assisted phone interview plus a homework assignment, 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
IgG 4 related disease (IgG4-RD) patients United States
60-minute web-assisted phone interview (WATI) and 60-minute focus group, compensation is $240
Immune Thrombocytopenic Purpura (ITP) patients United States
Will require between 5 to 30 minutes of your time, compensation is $43
Juvenile Arthritis (JA) or Giant Cell Arteritis (GCA) adolescent patients or caregivers of adolescents United States
60-75-minutes in-person interview, compensation is from $150
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: 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
Liver Disease (not hepatitis): NASH patients ages 18+ United States
30-minute online survey, compensation is $44
Lung Cancer: Non-Small Cell Lung Cancer (NSCLC)-Stage IV patients United States
60-minute web-assisted phone interview, compensation is $120
Lupus nephritis patients (18+) United States
60-minute web-assisted phone interview (WATI), compensation is $120
Melanoma, Non-Small Cell Lung Cancer (NSCLC) patients United States
25 minute online survey, compensation is $50
Multiple Sclerosis (MS) Patients who speak Spanish United States
20 minute online survey, compensation is $40
Myelopathy: HTLV-1 Associated Myelopathy (HAM)/Tropical Spastic Paraparesis (TSP) patients United States
60-minute web-assisted phone interview, compensation is $120
Myotonic Muscular Dystrophy (MMD) patients United States
45-minute web-assisted phone interview plus a 15-minute homework assignment, compensation is $90 for the interview and $30 for the homework assignment
Non-Small Cell Lung Cancer (NSCLC) Patients United States
40-minute online survey, compensation is $80
Non-Small Cell Lung Cancer (NSCLC) patients and caregivers United States
90-minute web-assisted phone interview (WATI) , compensation is $250
Non-Small Cell Lung Cancer (NSCLC) stage IV patients and caregivers of patients (age 22-75) diagnosed within the last 6 months to 5 years United States
60-minute web-assisted phone interview, compensation is $120
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
Prurigo Nodularis patients United States
60-minute web-assisted phone interview, compensation is $175
Rheumatoid Arthritis or Ulcerative Colitis patients United States
30-minute online survey, compensation is $50
Sepsis ExPEC patients United States
30-minute web-assisted phone interview plus possible in-person filming, compensation is $60 for the interview and hourly for the filming
Sleep Apnea Inspire Implant user patients United States
30-minute web-assisted phone interview, compensation is $60
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
United Kingdom
Alcoholism, Liver Disease (not hepatitis), Organ Transplant: Liver patients United Kingdom
60-minute web-assisted phone interview, compensation is 100 GBP
Amyotrophic Lateral Sclerosis (ALS) patients and caregivers United Kingdom
45-minute web-assisted phone interview, compensation is 70 GBP ($90 USD)
Myotonic Muscular Dystrophy (MMD) patients and caregivers United Kingdom
75-minute web-assisted phone interview plus a 25-minute homework assignment, compensation is 120 GBP for the interview and 40 GBP for the homework assignment
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
Canada
Endometrial Cancer patients Canada
90-minute web-assisted phone interview plus a 30-minute homework assignment, compensation is $250 CAD
Hereditary Angioedema patients ages 12+ and caregivers Canada
90-minute virtual interview, compensation is $202 CAD
France
Amyotrophic Lateral Sclerosis (ALS) patients and caregivers France
45-minute web-assisted phone interview, compensation is 80 EUR ($90 USD)
Myotonic Muscular Dystrophy (MMD) patients and caregivers France
75-minute web-assisted phone interview plus a 25-minute homework assignment, compensation is 140 Euros for the interview and 45 Euros for the homework assignment
Germany
Amyotrophic Lateral Sclerosis (ALS) patients and caregivers Germany
45-minute web-assisted phone interview, compensation is 80 EUR ($90 USD)
Myotonic Muscular Dystrophy (MMD) patients and caregivers Germany
75-minute web-assisted phone interview plus a 25-minute homework assignment, compensation is 140 Euros for the interview and 45 Euros for the homework assignment
Italy
Amyotrophic Lateral Sclerosis (ALS) patients and caregivers Italy
45-minute web-assisted phone interview, compensation is 80 EUR ($90 USD)
Spain
Achondroplasia patients and caregivers Spain
60-minute web-assisted phone interview, compensation is 110 EUR
Amyotrophic Lateral Sclerosis (ALS) patients and caregivers Spain
45-minute web-assisted phone interview, compensation is 80 EUR ($90 USD)
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.
