What's New at Rare Patient Voice?
Happy Holidays from All of Us at RPV!
Your voice is key to progress in new products and treatments - and we value you! We’d like to thank you for being part of the Rare Patient Voice community, from all of us at RPV.
Record a Video and Receive Rarity the Zebra!
Please help us spread the word to other patients and caregivers about Rare Patient Voice by submitting a short video about your experience with us. Using the Storyvine app, recording a video on your phone is quick, easy, and fun! Videos will be featured on our website, on social media, and in newsletters.
Check out and join the growing group of RPV patients and caregivers who have recorded stories!
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
Step 3: Film and upload your video!
To thank you for recording a video, we will send you a Rarity zebra plushie AND enter you in a raffle to win a $100 Amazon gift card. Congratulations to Stacy of South Carolina, our December 1 raffle winner! Our next raffle will be held in early January.
Partner Corner
The EPIC Foundation provides support, advocacy, and tools to those affected by chronic illnesses. The EPIC Foundation uniquely embraces the mind, body, and spirit, by focusing on key human issues such as trauma and loss. These are the vital issues that are commonly ignored while treating chronic illnesses.
Dr. Karen, founder and Executive Director of The EPIC Foundation, is inspired to be a voice for the voiceless: “I want to encourage others to fight for their lives and to never give up.” To learn more about The EPIC Foundation, you can visit them here:
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 close to 300 studies open for patients and caregivers! Some 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 the link below to complete the sign-up process and include all medical conditions to be considered for that study and any other relevant studies. Sign up here!
United States
Organ Transplant Patients United States AV_5244
60 min Phone Interview and Compensation is $120
Spinal Muscular Atrophy (SMA) Patients and Caregivers United States ZS_3610
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
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
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
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
Metachromatic Leukodystrophy (MLD)Caregivers of patients 0-19 years United States CHP_5946
60 min Web-Assisted Phone Interview and Compensation is $100
End Stage Renal Disease (ESRD) Patients United States SHG_6021
45 min ZOOM Interview and Compensation is $75
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
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
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
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
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
Eczema Caregivers United States M3_6204
60 min Web-Assisted Phone Interview plus 15 min Homework Assignment and Compensation is $125
Anxiety, ADHD or Depression Caregivers who have Evaluated Brightline United States ALP_6225
60 min Web-Assisted Phone Interview and Compensation is $100
Ovarian / Fallopian Tube Cancer Stage III or IV Patients United States SCH_6232
25 min Online Survey and Compensation is $45
Multiple Myeloma Patients United States SCH_4680
25 min Online Survey 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
Hypophosphatasia (HPP) Patients United Kingdom GP_6205
60 min Web-Assisted Phone Interview and Compensation is GBP 75
Alpha-1 Antitrypsin Deficiency Patients United Kingdom CH_6018
Pyoderma Gangrenosum Patients United Kingdom LSP_6191
60 min Web-Assisted Phone Interview and Compensation is 95 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
Alpha-1 Antitrypsin Deficiency Patients Germany CH_6018
Pyoderma Gangrenosum Patients Germany LSP_6191
60 min Web-Assisted Phone Interview and Compensation is 110 Euros
France
Proteinuric Hypertensive Kidney Disease Patients France ZS_6066
60 min Web-Assisted Phone Interview and Compensation is 133 Euros
Alpha-1 Antitrypsin Deficiency Patients France CH_6018
Pyoderma Gangrenosum Patients France LSP_6191
60 min Web-Assisted Phone Interview and Compensation is 110 Euros
Italy
Proteinuric Hypertensive Kidney Disease Patients Italy ZS_6066
60 min Web-Assisted Phone Interview and Compensation is 173 Euros
Pyoderma Gangrenosum Patients Italy LSP_6191
60 min Web-Assisted Phone Interview and Compensation is 90 Euros
Spain
Proteinuric Hypertensive Kidney Disease Patients Spain ZS_6066
60 min Web-Assisted Phone Interview and Compensation is 133 Euros
Pyoderma Gangrenosum Patients Spain LSP_6191
60 min Web-Assisted Phone Interview and Compensation is 90 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 $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.
