What's New at Rare Patient Voice?
Study Results
A few months ago, 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. One of the open-ended questions we asked was regarding experiences in dealing with medical professionals. The feedback we received was varied, but there was an overall sense of frustration shared about communicating with physicians and other healthcare professionals. Some examples:
- “I have felt as though I am threatened by medical providers if we do not provide care the way that they want us to, even if the care they are suggesting is not the best care for our loved one.”
- “I have learned to stand my ground, especially when medical professionals have argued with me.”
- “I’ve had to change healthcare plans and multiple doctors and specialists because they overlooked or disregarded my concerns for my loved one’s rare disease that were validated by another provider.”
- “I have met many compassionate researchers; without their efforts, much healing would not come to pass.”
- “There have been times when the medical professionals just DON’T KNOW what to do next as far as treatment goes.”
The Rare Caregiver Report can be found in its entirety here.
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, Nicole!
Partner Corner
The Gaucher Community Alliance is a 501(c)(3) non-profit patient and family support organization run by the patient community, for the patient community. The mission of the Gaucher Community Alliance is to support patients with Gaucher disease and their families through peer-to-peer support and education, advocacy, patient and family resources and networking. Increased collaboration and emotional support among patients living with neuronopathic and non-neuronopathic Gaucher disease may alleviate some of the burden associated with this rare disorder. Through mutual self-help and peer-to-peer connections, the organization aims to ensure that no families face this disease alone. As patient needs arise, The Gaucher Community Alliance advocates for patients through partnerships with the medical, research and industry communities to meet the ever-changing struggles and needs facing people with Gaucher disease. For more information, visit us at: https://www.gauchercommunity.org/
Referrals
Would you be interested in becoming a valued referral partner by promoting Rare Patient Voice and encouraging others to participate in research? As a referral partner, you play a pivotal role in recruiting patients and family caregivers to participate in all types of research studies. For each successful referral who signs up through your referral link, you will be eligible to receive compensation of $10 USD. Click here for more information and to sign up to be an RPV referral partner.
Staff Spotlight
Jennifer Messier began her journey with Rare Patient Voice in 2017 as a patient advocate and is now the Director of Patient Advocacy. Before joining Rare Patient Voice, she worked in education and was a stay-at-home mom for eighteen years.
“What I love most about working for Rare Patient Voice is the strong sense of community we've created. Being part of a team where many of us are patients or caregivers ourselves is truly special,” Jennifer says. “I love connecting with our patients and family caregivers, and helping them to share their stories.”
A beach lover who enjoys spending time with her family, Jen’s off hours include kayaking, walking, and shopping.
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 https://rarepatientvoice.com/for-patients/patient-and-caregiver-sign-up/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 Myeloid Leukemia patients and caregivers United States
60-minute web-assisted phone interview, compensation is $150
Alzheimer’s Disease or Cognitive Impairment patients and caregivers United States
30-minute web-assisted phone interview, compensation is $60
Amyotrophic Lateral Sclerosis (ALS) patients and caregivers United States
Choice of 120-minute in-home interview on 5/29 or morning of 5/30 (must live within 75 minutes of Philadelphia) or 60-minute web-assisted phone interview or 120-minute online focus group
Atopic Dermatitis patients currently taking or who have previously taken Adbry, Cibinqo, or Rinvoq United States
60-minute web-assisted phone interview, compensation is $125
Beta Thalassemia caregivers of patients ages 12-35 United States
60-minute web-assisted phone interview, compensation is $120
Beta Thalassemia Patients ages 18-35 United States
60-minute web-assisted phone interview, compensation is $120
Beta Thalassemia (Cooley’s Anemia) caregivers of children ages 10-17 United States
60-minute web-assisted phone interview, compensation is $120
Bladder Cancer patients United States
60-minute web-assisted phone interview, compensation is $145
Calciphylaxis patients United States
30-minute web-assisted phone interview, compensation is $60
Catheter User patients in the Philadelphia, PA area United States
90-minute in-person interview, compensation is $270
Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) patients ages 18-75 United States
30-minute web-assisted phone interview, compensation is $100
Chronic Kidney Disease with Cardiovascular Disease patients ages 35-75 and caregivers of patients ages 35-75 United States
Either 140 minutes/2 Interviews and a Diary or a a 90 minute duo Interview, compensation is $275 for 2 interviews and diary or $150 for the duo interview
Chronic Urticaria patients United States
90-minute web-assisted phone interview (WATI) + COD (confirmation of diagnosis), $175 (interview) and $75 (POC-proof of confirmation)
Clostridium Difficile (C-Diff) male patients and caregivers of male patients (diagnosed within the last 12 months) United States
60-minute web-assisted phone interview, compensation is $120
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)
Epilepsy male patients and caregivers of children ages 12-17 United States
60-minute web-assisted phone interview plus a 20-minute pretask assignment, compensation is $120 for the interview and $40 for the pretask assignment
Friedreich's Ataxia (FA) patients and caregivers United States
75-minute web-assisted phone interview, compensation is $200
Gastric Cancer, Stomach Cancer, or Vitiligo patients United States
90-minute focus group, compensation is $150
Gaucher Disease Type 1 patients and caregivers United States
30-minute online survey, compensation is $60
Gout patients United States
30-minute web-assisted phone interview, compensation is $60
Graves Disease patients United States
30-minute online survey, compensation is $60
Growth Hormone Deficiency (GHD), Idiopathic Short Stature (ISS), Prader-Willi Syndrome (PWS), Small for Gestational Age (SGA), Turner Syndrome patients or caregivers in Boston, Charlotte, Raleigh, and Orlando United States
3-hour in-person interview
Growth Hormone Deficiency (GHD), Idiopathic Short Stature (ISS), Noonan Syndrome (NS), Small for Gestational Age (SGA), Turner Syndrome (TS) caregivers of children in Arizona United States
60-minute in-person interview, compensation is $225
Hemophilia A patients (currently using Hemlibra) and caregivers United States
60-minute in-person interview, compensation is $180
Hemophilia A & B caregivers United States
30-minute online survey, compensation is $60
Hemophilia patients United States
15-minute online survey, compensation is $30
Hereditary Angioedema (HAE) caregivers United States
60-minute Zoom web-assisted phone interview, compensation is $120
Hidradenitis Suppurativa (HS) male patients United States
15 minute online survey, compensation is $30
IgA Nephropathy (Bergers Disease) patients United States
60-minute web-assisted phone interview, compensation is $120
IgA Nephropathy (Bergers Disease) patients United States
30-minute online survey, compensation is $100
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
Interstitial Lung Disease (ILD) or Pulmonary Fibrosis (PF) male patients United States
Two 60-minute web-assisted phone interviews plus confirmation of diagnosis, compensation is $95 per interview and $50 for confirmation of diagnosis
Leukemia or Non-Hodgkin's Lymphoma (NHL) with Cytokine Release Syndrome patients United States
60-minute web-assisted phone interview, compensation is $150
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
Narcolepsy Type 1 With Cataplexy, Narcolepsy Type 2 Without Cataplexy patients United States
30-minute online survey, compensation is $60
Ovarian Cancer patients United States
20-minute Voice Response Survey, compensation is $50
Phenylketonuria caregivers of adolescent children ages 12-17 United States
Online survey-up to 60 minutes, compensation is $65
Pyruvate Kinase Deficiency caregivers of patients ages 8-17 United States
60-minute web-assisted phone interview (patients answer questions, caregivers will present), compensation is $190
Rheumatoid Arthritis or Ulcerative Colitis patients United States
30-minute online survey, compensation is $50
Stomach (Gastric) Cancer Stage IV patients and caregivers United States
90-minute web-assisted phone interview, compensation is $250
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
Vasculitis patients United States
60-minute online survey, compensation is $125
Von Willebrand Disease Type 3 caregivers of children ages 12-17 United States
75-minute web-assisted phone interview plus confirmation of diagnosis, compensation is $190
United Kingdom
Hemophilia A & B patients and caregivers United Kingdom
30-minute online survey, compensation is 50 GBP
Neuroendocrine Cancer (NET) patients United Kingdom
45-60 minute web-assisted phone interview, compensation is 50 GBP
France
Hemophilia patients France
15-minute online survey, compensation is 27 Euros
Germany
Hemophilia patients Germany
15-minute online survey, compensation is 27 Euros
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.
