What's New at Rare Patient Voice?
Latest Updates at RPV
Rare Patient Voice is always growing and innovating with the goal of helping more patients and caregivers to share their experiences and make a difference. Patients and caregivers are the experts! Here are a few interesting updates at Rare Patient Voice:
- In addition to the US and Canada, we now recruit patients in the UK, France, Germany, Italy and Spain!
- Our community now includes over 563 different medical conditions!
- You can update your profile yourself anytime by clicking here.
- We have over 1000 referral partners across the world!
- If you are a referral partner, you can find your referral link in your profile! Here
Partner Corner
The STARR Coalition has partnered with leaders across research and advocacy to launch a National Call-to-Action for Mental Health Research. We all know that with cutting-edge, scientific research, we can find more ways to alleviate the symptoms associated with mental illness. Mental health research is not given the same funding and consideration as other medical conditions like cancer, diabetes or heart disease. We hope to the Call-to-Action will bring this conversation to the forefront by bringing awareness to research, increase funding, promote progressive policies and expand frontiers in brain research.
The STARR Coalition is a nonprofit organization working to build meaningful partnerships between research and advocacy. If your affiliate would like to learn more about research happening in your area, please contact Luke Kramer at luke@thestarr.org.
Referrals?
Would you like to refer others to participate in research?
You will receive $5 for everyone who signs up through your link!
https://
Current Study Opportunities
We currently have over 180 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 Debi Crist at debi.crist@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!
Diffuse Large B-Cell Lymphoma Patients and Caregivers US CLIN_4646
20 min Survey and Compensation is $100
Generalized Pustular Psoriasis (severe subtype of Psoriasis) Canadian Residents CA LMA_4836
30 min Web-Assisted Phone Interview and Compensation is $50
Allogeneic Hematopoietic Stem Cell Transplant Patients and Caregivers US TRI_4917
60 min Web-Assisted phone Interview and Compensation is $100
Mantle Cell Lymphoma Patients US
60 min Web-Assisted Phone Interview and Compensation is $100 MO_4159
Hemophilia A and B Patients UK INCI_5096
60 min Web-Assisted Phone Interview and Compensation is £ 73
Hemophilia A and B Patients US INCI_5096
60 min Web-Assisted Phone Interview and Compensation is $100
Paroxysmal Nocturnal Hemoglobinuria (PNH) Patients and Caregivers US MI_5156
60 min Zoom Interview and Compensation is $100
Transplant Recipient (Liver, Heart, Lung or Kidney) Patients US ALP_5195
60 min Web-Assisted Phone Interview and Compensation is $100
Organ Transplant Patients US AV_5244
60 min Phone Interview and Compensation is $120
Diffuse Large B Cell Lymphoma Patients US MI_5200
150 min Online Bulletin Board and Compensation is $150
Respiratory Syncytial Virus Caregivers US MCY_5250
90 min Phone Interview and Compensation is $150
Prostate Cancer Patients US MP_5263
60 min Web-Assisted Phone Interview and Compensation is $100
Scleroderma Patients US WISE_5231
45 min Web-Assisted Phone Interview and Compensation is $125
Myositis Patients US PHARV_5256
60 min Web-Assisted Phone Interview and Compensation is $100
Acute Myeloid Leukemia Patients US GP_5140
90 min Web-Assisted Phone Interview and Compensation is $200
Exocrine Pancreatic Insufficiency Patients US ALP_5252
60 min Phone Interview and Compensation is $100
Type 1 Diabetes Caregivers US MED_5277
25 min Online Survey and Compensation is $45
Autosomal Dominant Polycystic Kidney Disease Patients US INC_5260
45 min Web-Assisted Phone Interview and Compensation is $75
IgA/Berger's Disease Patients and Caregivers US M3_5258
60 min Online Activity Board and Compensation is $100
Mitochondrial Disease Patients US GP_5309
60 min Web-Assisted Phone Interview and Compensation is $50
Non-Small Cell Lung Cancer Patients & Caregivers US IQV_5318
60 min Phone Interview and Compensation is $100
Epilepsy Patients and Caregivers US DYN_5259
30 min Online Survey and Compensation is $50
Acromegaly Patients US SCH_5304
60 min Webcam Interview and Compensation is $150
Depression Patients Must be on Spravato US M3_5217
60 min Webcam Interview and Compensation is $100
Plaque Psoriasis MALE Patients US PSMR_5286
60 min Web-Assisted Phone Interview and Compensation is $50
Myelodysplastic Syndrome (MDS) Patients and Caregivers US KLK_5232
45 min Webcam interview and Compensation is $75
Sickle Cell Disease or B-Thalassemia Patients and Caregivers Canada BIO_5314
60 min Zoom Interview and Compensation is 150 CAD
Chronic Kidney Disease Patients US GP_5229
60 min Web-Assisted Phone Interview and Compensation is $125
Lupus Erythematosus Patients US GP_5214
30 min Online Survey and Compensation is $50
Ulcerative Colitis MALE Patients US HV_5321
20 min Online Survey and Compensation is $35
Cystic Fibrosis Caregivers US SHG_4816
90 min Web-Assisted Phone Interview and Compensation is $125
Bladder Cancer Patients US DYN_5327
30 min Online Survey and Compensation is $50
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.
How will I be paid?
You will earn $100 (USD) 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. Over the past eight years, Rare Patient Voice has paid patients over $6 Million dollars.
