What's New at Rare Patient Voice?
Study Results
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. The results were eye-opening and can be read in their entirety here:
https://rarepatientvoice.com/wp-content/uploads/2024/04/RareDiseaseSummit.pdf
In the Autumn edition of Rare Revolution Magazine, RPV President Wes Michael and Celia and James Chartres-Aris discuss those results and also the impact a rare disease can have on a marriage:
https://editions.rarerevolutionmagazine.com/html5/reader/production/default.aspx?pubname=&edid=7c7aea9f-4b97-402f-89fd-cdd1325154c5&pnum=48
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, Candace!
Partner Corner
The Blind Guide helps people thrive with vision loss. That includes guiding the caregivers who help them transition through loss and regain their independence. The founder, Ed Henkler, is a veteran and extends his services to help all people with disabilities, as well as veterans and military spouses, find meaningful work.
We connect employers with our unique network of veterans, veteran families, and people with disabilities (especially blindness). More relevant candidates from a hidden candidate market matched based on skills, compensation, and location rather than misleading resumes. Unemployment rates tend to be quite high for members of our hidden candidate market. The rate reaches 70% unemployment for people who are blind. Yet they can do almost anything on a laptop that a person who is sighted does. Sometimes they can outperform a sighted person. They also strengthen your team with cognitive diversity, ingenuity, and creativity. Retention improves given the paucity of other job opportunities for them. Built-in loyalty. Lastly, we can help you claim a tax credit as high as $9600 when you hire them.
Doing well by doing good! Let's talk. For more information, visit https://theblindguide.com/.
Staff Spotlight
Mirza Mujdzic-Jojic joined RPV in December 2023 as a Business Development Associate - EU, helping to drive RPV's growth strategy by identifying new business opportunities in the European market and building and maintaining client relationships. He holds a degree in Economics and Social Sciences from International Burch University in Bosnia and Herzegovina and has worked as a project manager for MR Tech Ops. Mirza is grateful for the opportunity to learn from and grow with the team at RPV.
“Being part of a team that truly values patients' and caregivers' voices allows me to feel connected to a bigger purpose every day. Being surrounded by colleagues who share this passion inspires me every day, and I’m grateful to be part of a team that encourages constant learning, exploration, and new opportunities. I love that RPV fosters an environment where collaboration and empathy are at the forefront, and I’m proud to contribute to this mission.”
In his off hours, Mirza enjoys swimming, photography, and volunteering in the fields of youth work and peace-building.
Share Your Voice Via Video!
If you’re part of the RPV community and enjoy participating in research studies, let us know! Join the growing group of patients and caregivers who have recorded videos about their Rare Patient Voice experience: https://rarepatientvoice.com#sharevoice. To thank you for recording a video, we will send you a $10 Amazon gift card! Follow these steps to record and submit your own video!
Step 1: Scan the code below with the camera app from your Apple/Android mobile device or click the link below!
https://admin.storyvine.com/app_users/sign_up/Sharing_My_Voice
Step 2: Download the Storyvine app from the App Store or Google Play
Step 3: Film and upload your video!
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 Myeloid Leukemia (AML) patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120
Alopecia: Alopecia Areata (AA) patients United States
60-minute web-assisted phone interview, compensation is $120
Alzheimer’s Disease, Cognitive impairment patients and caregivers who speak Spanish United States
30-minute web-assisted phone interview, compensation is $60
Alzheimer’s Disease or Cognitive Impairment patients and caregivers United States
30-minute web-assisted phone interview, compensation is $60
Amyloidosis: ATTR-CM 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
Autoimmune Encephalitis, Myelin Oligodendrocyte Glycoprotein Antibody Disease (MOGAD), Neuromyelitis Optica Spectrum Disorder (NMOSD), Thyroid Eye Disease (TED) patients and family caregivers in Charlotte, Chicago, Cincinnati, Columbus, and Raleigh United States
60-minute in-person interview, compensation based on length of participation
Carcinoma, Liver Cancer patients and caregivers United States
30-minute web-assisted phone interview plus a 15-minute online survey, compensation is $60 for the interview and $30 for the survey
Chronic Lymphocytic Leukemia (CLL), Lymphoma patients United States
60-minute web-assisted phone interview plus 15-minute prework assignment, compensation is $150
Chronic Myeloid (Myelogenous) Leukemia (CML) male patients and caregivers of male patients United States
30-minute online survey, compensation is $60
Chronic Spontaneous Urticaria male patients United States
60-minute web-assisted phone interview, compensation is $120
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
Congenital Adrenal Hyperplasia patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120
Dwarfism caregivers United States
30-minute online survey, compensation is $60
Endometrial Cancer: African American patients and caregivers professionally diagnosed and living in the United States
90-minute focus group (for both patients and caregivers), plus a 30-60 minute pre- and post-task (patients only). Compensation is $175 for caregivers and $350 for patients.
Endometrial Cancer patients United States
90-minute web-assisted phone interview, compensation is $200
Eosinophilic Esophagitis (EoE) patients and caregivers United States
Compensation based on type and length of interview
Esophageal Cancer, Gastric Cancer patients and caregivers United States
60-minute web-assisted phone interview, compensation is $120
Esophageal Cancer, Gastroesophageal Junction Cancer, Stomach (Gastric) Cancer patients and caregivers United States
30-minute online survey, compensation is $90
Exocrine Pancreatic Insufficiency patients United States
10-minute online survey, compensation is $30
Fabry Disease patients United States
30-minute online survey, compensation is $100
Familial Chylomicronemia Syndrome (FCS) patients and caregivers United States
Generalized Pustular Psoriasis patients United States
6-hour advisory board plus travel time, compensation is $95 per hour
Graft Versus Host Disease (GVHD) caregivers United States
60-minute focus group, compensation is $120
Hepatitis C (Hep C) non-Caucasian patients United States
3-year recruit for multiple tasks, compensation is hourly
Hypertrophic Obstructive Cardiomyopathy (HOCM) patients United States
2-week passive metering app, compensation is $300
Idiopathic Pulmonary Fibrosis (IPF) patients United States
60-minute web-assisted phone interview, compensation is $125
Idiopathic Pulmonary Fibrosis (IPF) patients and caregivers in CA, GA, IL, NC United States
120-minute in-person interview, compensation is $400
IgA Nephropathy (Berger's Disease) patients and caregivers United States
Multiple Myeloma (MM) patients and caregivers United States
45-minute web-assisted phone interview, compensation is $90
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
Myasthenia Gravis patients and caregivers United States
20-minute online survey, compensation is $40
Narcolepsy Type 1 With Cataplexy, Narcolepsy Type 2 Without Cataplexy male patients United States
30-minute online survey, compensation is $60
Obesity patients who have participated in a clinical trial United States
60-minute online survey, compensation is $120
Obesity patients who use Wegovy United States
30-minute web-assisted phone interview, compensation is $60
Pancreatic Cancer African American patients and caregivers (any ethnicity) United States
60-minute web-assisted phone interview, compensation is $150
Postpartum Depression (PPD) patients who have taken Zurzuvae United States
60-minute web-assisted phone interview, compensation is $120
Progressive Multifocal Leukoencephalopathy (PML) patients United States
60-minute web-assisted phone interview, compensation is $120
Prurigo Nodularis (PN) patients ages 18+ United States
60-minute web-assisted phone interview, compensation is $120
Pulmonary Arterial Hypertension (PAH) patients United States
45-minute online survey, compensation is $90
Rheumatoid Arthritis or Ulcerative Colitis patients United States
30-minute online survey, compensation is $50
Schizophrenia patients and caregivers United States
60-minute web-assisted phone interview, compensation is $62.50
Small Cell Lung Cancer patients and caregivers United States
60-minute web-assisted phone interview plus a 10-minute pre-work assignment, compensation is $150
Spinal Muscular Atrophy caregivers of children ages 2-5 United States
30-minute online survey, compensation is $50
Spinal Muscular Atrophy (SMA) patients and caregivers United States
30-minute online survey, compensation is $60
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
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
Colorectal (Colon) Cancer patients United Kingdom
75-minute web-assisted phone interview, compensation is 113 GBP
Epilepsy patients and caregivers United Kingdom
25-minute online survey, compensation is 38 GBP
Glaucoma patients ages 40+ United Kingdom
45-minute web-assisted phone interview, compensation is 70 GBP
Neuroendocrine Cancer (NET) patients United Kingdom
45-60 minute web-assisted phone interview, compensation is 50 GBP
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
Sickle Cell Disease (SCD) patients and caregivers Canada
25-minute online survey, compensation is 50 CAD
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 $13 million dollars since 2013 for participating in research studies.
