What's New at Rare Patient Voice?
Study Results
While Rare Patient Voice does not have access to the results of studies conducted by our clients, we do conduct internal studies from time-to-time and share these results back with our community. In a recent study, we asked patients with T1D if their (or their loved one’s) experience living with this condition were a book, what would its title be and what would they name the current chapter? Here are a few of the responses:
- Title would be “My Future with Diabetes” because that’s where I would have been at that time. The present chapter would be “It’s Not So Terrible.” Been dealing with it so long that it isn’t that detrimental to anything I’m dealing with. It’s all I’ve known for 50 years.
- The title would be, “What It’s Like to Really Live with Diabetes,” to help people that don’t understand what it’s really like. Current chapter would be “The Wonderful World of Current Technology.”
- I think living with diabetes, if you were to title a book, could be something along the lines of, “It’s Not About the Battle, It’s About the War.” That speaks volumes to everything that goes into diabetes. You might have small wins one day, small wins another day, but the key to diabetes is stability over time.
- “Making Lemons Out of Lemonade” or even better, “Playing the Hand That You’re Dealt.”
Be Part of the EURORDIS Black Pearl Awards!
The EURORDIS Photo Award is an opportunity to visually express what it means to live with a rare disease, and to share your story with the rare disease community and beyond. Every year, hundreds of people from all around the world submit their photos, each reflecting the drive of people living with a rare disease. The winner of the EURORDIS Photo Award 2022 will be announced live at the EURORDIS Black Pearl Awards Ceremony!
Learn more about this opportunity, deadline, and prizes: l.eurordis.org/xeZQ
Share Your Voice with a Video and Receive Rarity the Zebra!
At Rare Patient Voice, we are asking our members to record a short video about your experience with RPV to help spread the word about joining us. Using the Storyvine app, recording a video on your phone is easy, fun, and takes only a few minutes. The videos will be featured on our website, on YouTube, social media, and in newsletters!
Join the growing group of RPV patients and caregivers who have recorded stories! Check them out there: https://rarepatientvoice.com#sharevoice
Follow these steps to record and submit your own video!
Step 1: Scan with 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
Partner Corner
The MS Box was created to provide a compilation of various resources that may be helpful for someone with Multiple Sclerosis. Our snowflake box logo is a representation of the disease as it presents itself very uniquely in each individual as does a snowflake. The MS Box includes resources such as supplement and product suggestions, opportunities for patients to be heard, employment resources, and medical identification cards. Managing a chronic illness can be tough. The MS Box is on a mission to add value to the lives of fellow Multiple Sclerosis Warriors.
Referrals?
Would you like to refer others to participate in research? You will receive $10 for everyone who signs up through your link! Become a Referral Partner
Current Study Opportunities
We currently have 263 studies open for patients and caregivers! A few 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
Organ Transplant Patients United States AV_5244
60 min Phone Interview and Compensation is $120
Huntington Disease or Tardive Dyskinesia Patients United States M3_5317
75 min Phone Interview and Compensation is $125
Mastocytosis (Mast Cell Activating Disease, MCAD) Patients United States SHG_5336
60 min Web-Assisted Phone Interview and Compensation is $100
Behavioral Variant FTD Caregivers United States GP_5476
90 min Web-Assisted Phone Interview and Compensation is $150
Psoriatic Arthritis, Rheumatoid Arthritis, or Ulcerative Colitis Patients United States PHO_2397
30 min Online Survey and Compensation is $50
Alzheimer's, Dementia Caregivers United States GP_5495
60 min Phone Interview and Compensation is $125
Wilson's Disease Patients United States PICH_5656
5 min Online Survey and Compensation is $25 gift card
Caregivers of Juvenile conditions requiring injections, living in the Los Angeles area HFCS_5771
90 min On-Person Interview and Compensation is $275
Colorectal Cancer Male Patients United States GP_5406
90 min Phone Interview and Compensation is $200
Membranous Nephropathy Patients and Caregivers United States M3_5734
120 min Web-Assisted Phone Interview and Compensation is $250
COVID-19 Patients United States
60 min Web-Assisted Phone Interview and Compensation is $100
Chronic Kidney Disease (CKD) AND Heart Failure (must have both) Patients United States GP_5874
60 min Web-Assisted Phone Interview and Compensation is $100
Prostate Cancer Patients United States GP_5388
30 min Online Survey and Compensation is $50
Diabetes Type 1 Patients United States GP_5878
30 min Online Survey and Compensation is $50
Lupus Patients United States GP_5941
90 min Web-Assisted Phone Interview and Compensation is $125
Alzheimer’s or Dementia Patients United States RICE_4251
15 min Online Survey and Compensation is $25
Autism Patients United States KPD_5865
60 min Web-Assisted Phone Interview and Compensation is $150
Cancer Patients Philadelphia Area DS_5960
160 min In-Person Interview and Compensation is $375
Vulvar HSIL Patients United States RTI_5017
30 min Online Survey and Compensation is $100
Chronic Spontaneous Urticaria Patients United States NEX_5975
75 min Web-Assisted Phone Interview and Compensation is $125
Prurigo Nodularis Patients United States NEX_5975
75 min Web-Assisted Phone Interview and Compensation is $125
Metachromatic Leukodystrophy (MLD) Caregivers of patients 0-19 years United States CHP_5946
60 min Web-Assisted Phone Interview and Compensation is $100
Primary Hyperoxaluria Type 1 Patients and Caregivers United States CHP_6014
60 min Web-Assisted Phone Interview and Compensation is $100
Epilepsy Female Patients United States IPS_5978
120 min Web-Assisted Phone Interview and Compensation is $125
End Stage Renal Disease (ESRD) Patients United States SHG_6021
45 min ZOOM Interview and Compensation is $75
Transthyretin Amyloid Cardiomyopathy (ATTR-CM) Patients United States CHP_5939
60 min Web-Assisted Interview and Compensation is $100
Complement-3 Glomerulopathy Patients and caregivers United States ASC_6033
60 min Web-Assisted Interview and Compensation is $100
Neurofibromatosis (NF1) Caregivers of patients ages 0-17 United States CHP_6053
60 min Web-Assisted Interview and Compensation is $100
Glioblastoma Caregivers of patients ages 1-17 United States TIS_6016
60 min Web-Assisted Interview and Compensation is $100
Bladder Cancer Patients United States
60 min Web-Assisted Interview and Compensation is $100
Scleroderma Patients & Caregivers United States CLA_6055
60 min Web-Assisted Interview and Compensation is $100
Smoldering Multiple Myeloma Patients United States SCH_6089
60 min Web-Assisted Interview and Compensation is $100
Gout MALE Patients United States ENDP_5900
90 min Web-Assisted Interview and Compensation is $150
Polycythemia Vera Patients United States TRI_6028
60 min Web-Assisted Interview and Compensation is $100
Spina Bifida Patients and Caregivers United States M3_6079
60 min Web-Assisted Interview and Compensation is $100
Milk Allergy (not lactose intolerance)-HIV, Organ/Bone Marrow Transplants- Cancer treatment or taking a Cancer medication Patients United States QMMR_5201
60 min Phone Interview and Compensation is $100
Type 2 Diabetes Patients 65 and older United States RAD_6051
60 min Web-Assisted Interview and Compensation is $60
Amyotrophic Lateral Sclerosis (ALS) Patients and Caregivers United States PICH_5650
5-10 min Online Survey and Compensation is $25
Alzheimer's Disease Patients United States PICH_5649
5-10 min Online Survey and Compensation is $25
Spinal Muscular atrophy Patients and Caregivers United States ZS_3829
30 min Online Survey and Compensation is $50
Sickle Cell Disease Patients and Caregivers ages 12-17 United States IPS_5584
15 min Online Survey and Compensation is $25
Eczema Patients United States SHG_6107
60 min Web-Assisted Phone Interview and Compensation is $100
Non-radiographic Axial Spondyloarthritis Patients United States INC_6129
5 min Online Survey and Compensation is $20
Huntington's Disease Patients and Caregivers United States INC_6129
25 min Online Survey and Compensation is $45
Darier or Hailey-Hailey Disease Patients United States IQV_6103
30 min Web-Assisted Phone Interview and Compensation is $50
Patient Advocates working with a Nonprofit United States SVTA_6139
10 min Online Survey and Compensation is $40
Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) United States TRP_5933
60 min Zoom Interview and Compensation is $100
Diffuse Large B-Cell Lymphoma (DLBCL) United States IPS_6087
3-hour total- (2) 60-min Web-Assisted Phone Interviews plus 45-min Video Task and Compensation is $400
Sleep Apnea Patients United States DYN_5568
20 min Online Survey and Compensation is $35
Parkinson's Disease Caregivers United States INV_6022
20 min Voice response survey and Compensation is $40 Amazon Gift Card
Primary Immunodeficiency Patients and Caregivers United States SHG_6151
15 min Online Survey and Compensation is $25
Non-Small Cell Lung Cancer Patients United States ZS_6023
60 min Web-Assisted Phone Interview and Compensation is $100
Binge Eating Disorder Patients United States MED_6088
60 min Web-Assisted Phone Interview and Compensation is $175
Alpha-1 Antitrypsin Deficiency associated liver disease (AATD LD) Patients, Caregivers and Patient advocates United States CH_6018
30 min Web-Assisted Phone Interview and Compensation is $50
United Kingdom
End Stage Renal Disease (ESRD), Solid Organ Transplant or Primary Immunodeficiency United Kingdom LBR_6115
60 min Web-Assisted Phone Interview and Compensation is GBP 75
Proteinuric Hypertensive Kidney Disease Patients United Kingdom ZS_6066
60 min Web-Assisted Phone Interview and Compensation is 112 GBP
Canada
Organ Transplant Patients Canada AV_5244
60 min Phone Interview and Compensation is 80 CAD
Proteinuric Hypertensive Kidney Disease Patients Canada ZS_6066
60 min Web-Assisted Phone Interview and Compensation is 142 CAD
Germany
Hepatitis D Patients Germany GEN_6009
60 min Phone Interview and Compensation is 80 Euros
Proteinuric Hypertensive Kidney Disease Patients Germany ZS_6066
60 min Web-Assisted Phone Interview and Compensation is 133 Euros
France
Proteinuric Hypertensive Kidney Disease Patients France ZS_6066
60 min Web-Assisted Phone Interview and Compensation is 133 Euros
Italy
Proteinuric Hypertensive Kidney Disease Patients Italy ZS_6066
60 min Web-Assisted Phone Interview and Compensation is 173 Euros
Spain
Proteinuric Hypertensive Kidney Disease Patients Spain ZS_6066
60 min Web-Assisted Phone Interview and Compensation is 133 Euros
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 $100 per hour for participating in 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. Since 2013, Rare Patient Voice has paid patients over $8 million dollars for participating in research studies.
