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Survey Results
April is Neurodiversity Awareness Month! Neurodivergence refers to a range of conditions that affect how the brain processes information, including dyslexia, dyscalculia, autism spectrum disorder, and attention-deficit/hyperactivity disorder (ADHD), to name just a few.
Estimates suggest that around 15% to 20% of the US population is neurodiverse, which can have an impact in the workplace for the employee as well as the employer. According to a Rare Patient Voice survey of 1,197 people living with a neurodiversity, only 23% disclosed their neurodivergence during hiring due to fears of discrimination, stigma, or concerns about relevance to job performance and only 32% of respondents requested accommodations at work!
Because neurodiverse workers think differently, they have a lot to offer in the workplace and providing accommodations for neurodiverse workers makes sense. Common accommodations are easy to provide and include:
- Flexible schedules or remote work
- Extra time or breaks
- Written instructions or visual aids
- Noise-canceling headphones or quiet workspaces
For more information, download the RPV study, Working Together Smarter: The Impact of Accommodations in Business and the Neurodiverse Community.
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, Christine G!
Partner Corner
Our Vision:
We envision a world where every MDS patient has access to the best possible care, treatments, and support—driving advancements in research, increasing awareness, and ultimately improving outcomes for all those impacted by MDS.
Our Mission:
The MDS Foundation is dedicated to improving the lives of those affected by Myelodysplastic Syndromes (MDS) through patient support, professional education, research, and advocacy. We strive to empower patients, caregivers, and healthcare professionals with the knowledge and resources needed to navigate MDS with confidence.
Website: www.mds-foundation.org
Social: https://www.instagram.com/mdsfoundation/
Staff Spotlight
Sara Prosic joined Rare Patient Voice in July 2024 as a Business Development Associate, focusing on enhancing the bidding and proposals process and building strong customer relationships. She is a graduate of International Burch University, with a major in Marketing Management. With extensive experience working in the non-governmental sector, Sara has held roles in project management and public relations/marketing for youth organizations in Bosnia and Herzegovina.
“What I love most about working for RPV is helping to bring patients' voices to the forefront and ensuring their experiences are truly heard and valued. I also enjoy building connections with clients and being part of an incredible sales team that goes above and beyond in delivering outstanding customer service—while making a real difference for patients and caregivers,” Sara says.
When not providing excellent customer service as part of the RPV sales team, Sara likes to spend time reading, traveling, hiking, exploring new destinations, and enjoying time in the great outdoors with friends.
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
60-minute web-assisted phone interview, compensation is $125
Alopecia Areata, Vitiligo patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120
Alpha-Mannosidosis (AM) caregivers United States
Compensation is $125
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, Texas, and Wisconsin United States
Breast Cancer (BC) patients United States
30-minute web-assisted phone interview, compensation is $60
Bronchiectasis, Mycobacterium Avium Complex (MAC), Nontuberculous Mycobacterial (NTM) United States
Bronchiectasis, Mycobacterium Avium Complex (MAC), Nontuberculous Mycobacterial (NTM) patients United States
Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) patients United States
60-minute web-assited phone interview, compensation is $120
Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) patients United States
30-minute online survey, compensation is $60
Chronic Obstructive Pulmonary Disease (COPD) patients who use Breztri United States
60-minute web-assisted phone interview, compensation is $125
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
Crohn's Disease (CD), Ulcerative Colitis (UC) patients who use Omvoh United States
60-minute web-assisted phone interview, compensation is $120
Cushing's Syndrome (Hypercortisolism) patients United States
30-minute online survey, compensation is $60
Dravet Syndrome caregivers United States
Dwarfism: Hypochondroplasia patients and caregivers United States
30-minute web-assisted phone interview, compensation is $60
Eczema (Atopic Dermatitis) caregivers of patients ages 2-13 United States
60-minute web-assisted phone interview, compensation is $120
Endometrial Cancer patients United States
90-minute web-assisted phone interview, compensation is $200
Epilepsy: Focal Seizures (Partial Seizures) patients United States
60-minute web-assisted phone interview plus a 15-minute online survey, compensation is $160
Fibrodysplasia Ossificans Progressiva (FOP) patients 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
Gaucher Disease (GD), Hereditary Angioedema patients ages 18-79 and caregivers United States
20-minute online survey, compensation is $40
Graft Versus Host Disease (GVHD) patients and caregivers United States
60-minute web-assisted phone interview plus a 15-minute homework assignment to be completed prior to interview, compensation is $125 for the interview and $25 for the homework assignment
Grave's Disease (GD), Thyroid Eye Disease (TED) patients United States
120-minute in-person interview in New York City, compensation is $360
Heart Disease, High Cholesterol Asian, Native Hawaiian, or Pacific Islander patients United States
Heart Disease: Hypertrophic Obstructive Cardiomyopathy (oHCM) patients United States
120-minute web-assisted phone interview, compensation is $120
Heart Disease: Hypertrophic Obstructive Cardiomyopathy (oHCM) patients and caregivers United States
30-minute online survey, compensation is $60
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
Hepatitis: Hepatitis C (Hep C) Non-Caucasian male 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
Hypophosphatasia (HPP) caregivers United States
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, Texas, and Wisconsin United States
Kidney Disease: Focal Segmental Glomerulosclerosis (FSGS) patients United States
60-minute web-assisted phone interview, compensation is $120
Kidney Disease: IgA Nephropathy (Berger's Disease) patients United States
90-minute web-assisted phone interview, compensation is $150
Kidney Disease: IgA Nephropathy (Berger's Disease) patients United States
20-minute online survey, compensation is $40
Lung Cancer: Non-Small Cell Lung Cancer (NSCLC) patients United States
60-minute virtual interview via Google Meet, compensation is $175
Lupus: Systemic Lupus Erythematosus (SLE) non-Caucasian patients United States
30-mintue online survey, compensation is $60
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): Primary Progressive MS (PPMS) caregivers United States
60-minute web-assisted phone interview, compensation is $125
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
Non‐Cystic Fibrosis Bronchiectasis (NCFB) patients United States
30-minute online survey, compensation is $60
Obstructive Hypertrophic Cardiomyopathy (oHCM) patients and caregivers United States
Osteoporosis female patients in Chicago, IL United States
90-minute in-home interview, compensation is $375
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
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.
Phenylketonuria (PKU) patients United States
Phenylketonuria (PKU) patients and caregivers United States
60-minute web-assisted phone interview, compensation is $60
Platinum Resistant Ovarian Cancer patients United States
60-minute web-assisted phone interview, compensation is $120
Prostate Cancer patients ages 40-80 and caregivers United States
60-minute web-assisted phone interview plus a homework assignment, compensation is $120 for the interview and $25 for the homework
Psoriasis: Generalized Pustular Psoriasis (GPP) patients United States
Advisory board in Dallas, TX, compensation is $95 per hour plus travel accommodations
Rheumatoid Arthritis or Ulcerative Colitis patients United States
30-minute online survey, compensation is $50
Schizophrenia patients United States
30-minute online survey, compensation is $60
Severe Asthma patients United States
60-minute web-assisted phone interview, compensation is $120
Spinal Muscular Atrophy (SMA) caregivers of patients under age 18 United States
60-minute web-assisted phone interview, compensation is $120
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
Unresectable Hepatocellular Carcinoma (uHCC) patients United States
90-minute web-assisted phone interview, compensation is $150
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
Warm Autoimmune Hemolytic Anemia (WAIHA) patients United States
30-minute voice response survey, compensation is a $60 Amazon gift card
Vision Impairment patients in Chicago (IL), Denver (CO), Houston (TX), Philadelphia (PA) United States
60-minute in-person interview, compensation is $180
Vision Impairment: Retinal Vein Occlusion patients ages 40-65 United States
90-minute online bulletin board plus a follow up 60-minute web-assisted phone interview, compensation is $180 for the online bulletin board and $120 for the interview
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
Canada
Phenylketonuria (PKU) patients and caregivers Canada
60-minute web-assisted phone interview, compensation is $60 USD
United Kingdom
Eczema (Atopic Dermatitis) male patients United Kingdom
25-minute online survey, compensation is 40 GBP
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
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
Germany
Propionic Acidemia (PA) patients and caregivers Germany
60-minute web-assisted phone interview, compensation is 110 Euros
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.
