What's New at Rare Patient Voice?
Referrals?
Rare Patient Voice welcomes patients and caregivers across both rare and non-rare conditions! Would you like to refer others to participate in research? You will receive $5 for everyone who signs up through your link!
Become a Referral Partner!
Texting!
Great news! We have added texting as another way for you to receive invitations to participate in research! In order to use this feature, you must click on the link below and go to your profile to confirm that you wish to receive invitations via text.
If you have not verified your cell phone for Text Message Study Invites from us, click the link below!
https://panel.
Partner Corner
There Goes My Hero
For many patients with blood cancer, a bone marrow or blood stem cell transplant is the best chance for survival. Just by swabbing your cheek, you could be identified as a life-saving match for a blood cancer patient in need. Each year, 14,000 patients rely on the generous donations of complete strangers, but 6 out of 10 patients still cannot find a match on the registry. With the help of our partner DKMS, There Goes My Hero saves lives by adding potential donors to the bone marrow registry. You can help us continue our mission by hosting a bone marrow registry drive at your work, place of worship, neighborhood organization, or any community gathering. It takes less than 10 minutes to become a potential Hero, and the process is quick and painless.
Donate through our monthly donation program, host an event on our behalf, attend an event, sponsor an event, or become a volunteer. You can help us continue our mission through your generosity and time.
Whether you donate time, money, or bone marrow, we need you. If you are interested in Hosting a Bone Marrow Drive, please contact Elena.Manco@theregoesmyhero.org.
Current Study Opportunities
We currently have over 190 studies open for patients and caregivers! A few of the studies we are working to fill immediately are listed below.
- 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.
- 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 be interested!
Generalized Pustular Psoriasis (severe subtype of Psoriasis) Canadian Residents CA LMA_4836
30 min Web-Assisted Phone Interview and Compensation is $50
Mantle Cell Lymphoma Patients United States Residents MO_4159
60 min Web-Assisted Phone Interview and Compensation is $100
Hemophilia A and B Patients & Caregivers United Kingdom Residents INCI_5096
60 min Web-Assisted Phone Interview and Compensation is £ 73
Hemophilia A and B Patients & Caregivers United States Residents INCI_5096
60 min Web-Assisted Phone Interview and Compensation is $100
Organ Transplant Patients US, UK, and Canadian Residents AV_5244
60 min Phone Interview and Compensation is $120
Respiratory Syncytial Virus Caregivers United States Residents MCY_5250
90 min Phone Interview and Compensation is $150
Myositis Patients United States Residents PHARV_5256
60 min Web-Assisted Phone Interview and Compensation is $100
Acute Myeloid Leukemia Patients United States Residents GP_5140
90 min Web-Assisted Phone Interview and Compensation is $200
Exocrine Pancreatic Insufficiency Patients United States Residents ALP_5252
60 min Phone Interview and Compensation is $100
Huntington Disease or Tardive Dyskinesia Patients United States Residents M3_5317
75 min Phone Interview and Compensation is $125
Bronchiectasis Caregivers United States Residents KOR_5419
60 min Webcam Interview and Compensation is $150
Acute Lymphoblastic Leukemia Patients that were on Kymriah United States Residents EXC_5387
60 min Phone Interview and Compensation is $100
Osteoporosis Female Patients ages 50 plus United States Residents APA_5424
45 min Web-Assisted Phone Interview and Compensation is $75
Polycythemia Vera (PV) Patients United States Residents BO_5316
60 min Web-Assisted Phone Interview and Compensation is $100
Hemophilia A or B Patients in the Chicago area NIIC_5359
75 min In-Person Interview and Compensation is $350
GERD Hispanic Patients United States Residents SHG_5447
60 min Web-Assisted Phone Interview and Compensation is $100
Epidermolysis Bullosa (EB) Patients and Caregivers United States Residents KRY_5405
60 min Phone Interview and Compensation is $100
Gallbladder, Bile Duct, Hepatocellular carcinoma Cancers Patients and Caregivers United States Residents M3_5445
60 min Web-Assisted Phone Interview and Compensation is $100
Myelofibrosis Patients United States Residents COS_5438
90 min Web-Assisted Phone Interview plus 2 Online Surveys and Compensation is $200
Bullous Pemphigoid Patients and Caregivers United States Residents IQV_5432
45 min Web-Assisted Phone Interview plus 15 min Pre-Work and Compensation is $100
Bladder Cancer Patients and Caregivers United States Residents JWW_5474
60 min Web-Assisted Phone Interview plus 45 min Online Journal and Compensation is $225
Hereditary Angioedema (HAE) Patients and Caregivers United States Residents KPD_5478
60 min Web-Assisted Phone Interview and Compensation is $100
Behavioral Variant FTD Caregivers United States Residents GP_5476
90 min Web-Assisted Phone Interview and Compensation is $150
Kidney Disease -IgA/Berger's Disease Patients and Caregivers United States Residents M3_5258
60 min Online Activity Board and Compensation is $100
Small Cell Lung Cancer Patients and Caregivers United States Residents
90 min Web-Assisted Phone Interview and Compensation is $150
Alzheimer's Disease Caregivers United States Residents PHA_5223
60 min Online Survey and Compensation is $100
Sickle Cell Disease - Patients and Caregivers of Adolescents United States Residents RTI_5379
90 min Web-Assisted Phone Interview and Compensation is $150
Gastric Cancer Patients United States Residents IQV_5485
90 min Phone Interview and Compensation is $185
Soft Tissue Sarcoma Patients United States Residents MO_5281
90 min Phone Interview and Compensation is $150
NASH / Liver Disease Patients United States Residents GP_5402
90 min Web-Assisted Phone Interview and Compensation is $150
Neuromyelitis Optica (NMO) Patients United States Residents AIS_5536
60 min Webcam Interview and Compensation is $100
Chronic Lymphocytic Leukemia Patients United States Residents SCH_5503
10 min Online Survey and Compensation is $35
Esophageal Carcinoma Patients and Caregivers United States Residents FLI_5511
90 min Phone Interview and Compensation is $150
Duchenne Muscular Dystrophy (DMD) Caregivers United States Residents BRN_5553
60 min Online Survey and Compensation is $100
Kidney Disease Patients United States Residents SCH_5497
60 min Phone Interview and Compensation is $100
Chronic Cough - Non-Caucasian Patients United States Residents BCI_5573
90 min Webcam Interview and Compensation is $100
Mucopolysaccharidoses II Caregivers United States Residents SER_5560
60 min Phone Interview and Compensation is $100
Dry Macular Degeneration Patients United States Residents CHP_5555
60 min Web-Assisted Phone Interview and Compensation is $100
Vitiligo Patients United States Residents TRP_5565
60 min Web-Assisted Phone Interview and Compensation is $100
Esophagus Cancer Patients and Caregivers United States Residents AFS_5570
45 min Phone Interview and Compensation is $75
Lung Cancer - African American / Ages 50 – 75 Patients United States Residents SEEK_5513
60 min Web-Assisted Phone Interview and Compensation is $100
NASH Patients United States Residents TOL_5601
15 min Online Survey and Compensation is $25
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. We are extremely proud to say that we've awarded patients and caregivers with over $8 million for participating in surveys and interviews since 2013!
