What's New at Rare Patient Voice?
Patients and Caregivers Love Sharing Their Voices!
As you probably know, Rare Patient Voice pays patients and family caregivers for participating in all types of research studies. But that is actually not the main reason most tend to take part! Check out this new video on the topic from Wes Michael, President and Founder of RPV, shared in celebration of our tenth anniversary.
Free Online Storefronts from Honeycomb Health
Honeycomb Health offers advocacy groups the ability to create an online store that helps to raise funds for their organizations. All stores are created and freely hosted by Honeycomb Health. All purchases are 100% tax deductible, and 90% of the profit goes directly to the advocacy group. For more, please visit honeycombhealth.store.
If you know of a rare disease organization that might be interested in setting up a store, please have them fill out the interest form and someone from Honeycomb Health will be in touch shortly. The form can be accessed here: https://honeycombhealth.store/pages/sign-up.
About Honeycomb Health: Honeycomb Health is part of GTO Greater Good, a philanthropy, created and managed by the men and women of Greater Than One, Inc. Greater Than One is an independent, diverse and award winning healthcare advertising agency that offers media, marketing, creative and technology services.
Didn’t Qualify? We Still Value Your Time
We appreciate your participation and being part of the RPV community, even if you don'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, Marcie!
Partner Corner
InvisiYouth Charity is a 501(c)3 nonprofit organization that helps teens and young adults with any chronic illnesses and disabilities around the world (both physical and mental health-related) gain the right life-improving teachings, virtual resources, and interactive activism to learn how to keep living life and thrive with any health struggles. Established in 2015 by Dominique Viel, it was inspired by her own experiences as an injured teen competitive tennis player that resulted in her diagnosis of a neurovascular condition, growing up with chronic illnesses, and navigating the healthcare world. Now, InvisiYouth’s resources reach young adults in over 10 countries and are provided for free every month in a digital capacity so young adults can have access to tangible life-improving advice and techniques they can incorporate into their daily life to adapt and thrive. It is this personal passion that allowed our founder to use her many years of experience as a patient advocate and public speaker in children’s hospitals and schools to tailor the InvisiYouth mission so that all young people, their families and support networks, and those in the medical community, understand how to best support, advocate and empower young people to live their most fulfilled lives possible so they no long live with the mindset of ‘waiting for the cure’ to find success and joy. For more information, visit https://invisiyouthcharity.com/.
Referrals?
Would you like to spread the word about RPV and refer others to participate in research? You will receive $10 for everyone who signs up through your link! Become a Referral Partner
Staff Spotlight
Get to know our team! This month, meet Pam Cusick, Senior Vice President of Rare Patient Voice.
An experienced research professional, Pam’s background in public health communications and research, coupled with her passion for patient advocacy, dovetail with Rare Patient Voice’s mission and vision. She joined RPV in 2016 and as Senior Vice President, Pam’s focus is on the company’s continued growth and success. She hopes to expand RPV’s panels to include all patients and family caregivers who want to share their opinions and impact their disease category.
“I’m so proud of what we do for patients and family caregivers. Doctors’ input was long used as a proxy for the patient voice, and that’s not good enough. Patients are the frontline experts on their conditions, and industry needs their input to develop products and services that will help them and their families,” Pam says. “It’s such a great feeling when I’m at an event and a patient stops by to share how wonderful their experience with RPV was and how valued they felt to give their opinions and insights.”
In her off hours, Pam loves spending time with her husband, two sons, and Fergus the Border Collie. She enjoys the beach as well as watching movies, her favorite being “The Wizard of Oz.” In fact, several years ago she dressed as Dorothy for Halloween, while RPV President Wes Michael went as the Scarecrow!
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.
Acute Lymphoblastic Leukemia (ALL) patients United States
(1) 90-minute web-assisted phone interview (WATI) or (2) 45-minute web-assisted phone interviews (WATI), compensation is $150
Alzheimer's Disease patients United States
This is a 5-minute survey for a medical history platform and the compensation is a $25 gift card to be paid by the client (after confirmation of diagnosis through medical records)
Bardet Biedl Syndrome (BBS) patients and caregivers United States
60-minute web-assisted phone interview (WATI), compensation is $100
Bladder Cancer, Gastric Cancer (Stomach Cancer), Head & Neck Cancer, Melanoma, Non-small cell Lung Cancer (NSCLC), Renal Cell Carcinoma, or Triple-negative Breast Cancer (TNBC) caregivers United States
30-minute online survey, compensation is $60 Gift Card
Bladder Cancer non-caucasian patients United States
60-minute focus group, compensation is $100
Cervical Cancer patients (diagnosed withing the last 5 years) United States
60-minute web-assisted phone interview (WATI) + 15-minute homework, compensation is $150
Clostridium Difficile (C Diff) patients and caregivers United States
Online community; community members can earn gift cards for completing activities; members may also be chosen to complete a 60-minute web-assisted phone interview for a $100 reward
Colorectal Cancer patients United States
Two - 60-minute web-assisted phone interviews, compensation is $200
Complement 3 Glomerulopathy (C3G) Kidney Disease patients 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
Crohn's Disease (CD), Eczema, Juvenile Idiopathic Arthritis, Psoriatic Arthritis (PsA) or Ulcerative Colitis adolescent patients and caregivers (living in Philadelphia) United States
30-minute training & 75-minute interview or a 75-minute interview, compensation training is $100, interview is $225
Crohn's Disease patients United States
Online community, compensation $50 welcome gift card and $60 for online community activities
Cystic fibrosis (CF) patients (18+) United States
30-minute online survey, compensation is $50 electronic gift card
Cystic Fibrosis patients (18+ ) and caregivers (of patients 6-17 years) United States
60-minute web-assisted zoom interview (WATI), compensation is $120
Diabetes (DM) Type 1 or 2 or Obesity adolescent patients with caregiver United States
45-minute in-person interview, compensation is $175
Diffuse Large B Cell Lymphoma (DLBCL) patients United States
Eczema (Atopic Dermatitis) patients (18-26 years) United States
15-minute online survey, compensation is $30
Epilepsy patients United States
4-month online bulletin board, compensation up to $1,025
Endometrial (Uterine) Cancer patients United States
60-minute web-assisted zoom interview (WATI), compensation is $150
Essential tremor (ET) or Parkinsons patients using a Deep brain stimulation (DBS) United States
90-minute group interview by computer, compensation is $180
Fabry Disease patients and caregivers United States
60-minute web-assisted phone interview (WATI) + 30-minute homework, compensation is $180
Fragile X-Associated Tremor/Ataxia Syndrome (FXTAS) patients United States
60-minute web-assisted phone interview (WATI), compensation is $120
Fuch's Endothelial Corneal Dystrophy (FECD) patients United States
60-minute web-assisted phone interview (WATI), compensation is $125
Growth Hormone Deficiency (GHD) caregivers (of children 1-17) United States
10-minute online survey, compensation is $25
Growth Hormone Deficiency, Noonan Syndrome, Small for Gestational Age (SGA) patients and caregivers United States
90-150-minute in-person interview, compensation is $180-$300
Hemolytic Disease of the Fetus and Newborn (HDFN) caregivers United States
Part 1 60-minute homework with 90-minute Follow Up Focus Group Part 2 2 Hour Reaction Group Interview, compensation from $240
Hemophilia A or B patients United States
30-minute online survey, compensation is $60
Hepatitis B (Hep B) and HIV patients United States
60-minute web-assisted phone interview (WATI), compensation is $120
Hepatitis C patients United States
45-minute web-assisted zoom interview (WATI), compensation is $90
Hereditary Hemochromatosis (HH) patients United States
45-minute web-assisted phone interview (WATI) + e-journal, compensation is $280
Hereditary Spastic Paraplegia (HSP) patients United States
60-minute web-assisted phone interview (WATI), compensation is $120
Huntington'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
IgA nephropathy (Berger's Disease) patients United States
20-minute online survey, compensation is $40
IgG 4 related disease (IgG4-RD) patients United States
60-minute web-assisted phone interview (WATI) and 60-minute focus group, compensation is $240
Interstitial Lung Disease (ILD), Pulmonary Arterial Hypertension (PAH), OR Pulmonary Fibrosis (PF) patients (currently using or have used Tyvaso Nebulizer or Tyvaso DPI) United States
60-minute web-assisted zoom interview (WATI), compensation is $120
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
Lupus nephritis patients (18+) United States
60-minute web-assisted phone interview (WATI), compensation is $120
Metastatic Breast Cancer patients United States
25-minute online survey, compensation is $50
Myasthenia Gravis caregivers United States
45-minute online survey, compensation is $90
Narcolepsy patients United States
75-minute web-assisted phone interview (WATI) + 20-minutes pre-work , compensation is $190
Netherton Syndrome patients and caregivers United States
60-minute web-assisted phone interview (WATI), compensation is $150
Non-Small Cell Lung Cancer (NSCLC) AAPI female patients or caregivers United States
60-minute web-assisted phone interview (WATI), compensation is $120
Non-Small Cell Lung Cancer (NSCLC) patients and caregivers United States
90-minute web-assisted phone interview (WATI) , compensation is $250
Nontuberculous Mycobacterial (NTM) patients United States Eligible study participants will be paid up to $450 ($300 for participation in a 2-hour study interview [can be completed in two 1-hour sessions] and $150 for an additional 1-hour study interview).
Ovarian Cancer patients (stage 3 or 4 currently using Zejula (niraparib) United States
15-minute online survey, compensation is $30
Overactive Bladder (OAB) patients (have used Botox) United States
60-minute web-assisted phone interview (WATI), compensation is $200
Pancreatic Cancer patients United States
90-min web-assisted phone interview (plus a 30-min homework assignment) compensation is $225
Parkinson's disease patients United States
25-minute online survey, compensation is $50
Paroxysmal Nocturnal Hemoglobinuria (PNH) patients United States
30-minute online survey, compensation is $60
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)
Rheumatoid Arthritis or Ulcerative Colitis patients United States
30-minute online survey, compensation is $50
Small Cell Lung Cancer patients United States
60-minute web-assisted phone interview, compensation is $150
Spinal Muscular Atrophy (SMA) male patients United States
60-minute web-assisted phone interview (WATI), compensation is $120
Turner Syndrome patients and caregivers (adolescent patients) United States
90-minute in-person interview, compensation is $300
Vasculitis patients United States
90-minute web-assisted phone interview (WATI), compensation is $158
United Kingdom
Amyloidosis patients United Kingdom
40-minute online survey + 75-minutes web-assisted phone interview (WATI), compensation is $198.65
Hereditary Angioedema patients United Kingdom
60-minute web-assisted phone interview (WATI), compensation is 80 GBD
Canada
Acute Lymphoblastic Leukemia (ALL) patients Canada
(1) 90-minute web-assisted phone interview (WATI) or (2) 45-minute web-assisted phone interviews (WATI), compensation is $150
Amyloidosis patients Canada
40-minute online survey + 75-minutes web-assisted phone interview (WATI), compensation is $275
France
Myasthenia Gravis patients France
60-minute web-assisted phone interview (WATI), compensation is 80 EUR
Germany
Eczema, Psoriatic Arthritis, Rheumatoid Arthritis patients Germany
5-hour web-assisted phone interview (WATI), compensation is 250 EUR
Myasthenia Gravis patients Germany
60-minute web-assisted phone interview (WATI), compensation is 75 EUR
Vasculitis patients Germany
90-minute web-assisted phone interview (WATI), compensation is 75 Euros
Italy
Eczema, Psoriatic Arthritis, Rheumatoid Arthritis patients Italy
5-hour web-assisted phone interview (WATI), compensation is 480 EUR
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?
As of January 1, 2023, you will earn $120 per hour (typically) for participating in new studies. We pay by check to ensure patients can use their compensation in any way they wish.
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.
