What's New at Rare Patient Voice?
RPV Returns To In-Person Events!
It’s been a long two+ years of not meeting patients and caregivers at live events, which were canceled because of COVID19. We are very happy to announce that patient events are returning, and so are we! RPV will be attending the following event later this week. If your organization is planning an in-person event that you think we should be at, please let us know!
May 27-29 The 24th Annual Family Cafe Orlando, FL
Since 1998, The Annual Family Café has brought Floridians with all types of disabilities together for three days of information, training, and networking. With a range of individual breakout sessions, an exhibit hall with dozens of vendors, and a series of special events including keynote speakers and The Governors’ Summit on Disabilities, The Annual Family Café offers attendees exposure to resources on a grand scale, unprecedented access to policy-making officials, and a chance to network with other individuals with disabilities and their families
Share Your Voice Via Video, Receive Rarity!
Help us spread the word to other patients and caregivers about RPV by submitting a short video on your experience with us. Check out the growing group of patients and caregivers who have recorded stories: https://rarepatientvoice.com#sharevoice. As thanks 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 our April winner, Susan!
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!
Partner Corner
Johnny Crowder is the Founder and CEO of CopeNotes.com, a daily mental health support app. Here, he talks about why he created Cope Notes.
“When I was growing up, I thought only people living with severe mental illness needed to use mental health resources. That's kind of like saying that only people with cavities need to brush their teeth!
I created Cope Notes to help people from all walks of life improve their mental and emotional health on a daily basis. Whether you're living with a diagnosis or not, Cope Notes uses daily text messages to train your brain to think healthier thoughts. Pretty cool, right? Give it a try and let me know what you think!”
Check out Johnny talking about Cope Notes and mental health on TedX: https://copenotes.com/tedx/. To learn more, please visit www.copenotes.com.
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 have hundreds of 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 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
Neuromyelitis Optica Spectrum Disorder (NMOSD) patients United States SRI_5884 Wave 2
20-minute online survey, compensation is $35
Pancreatic or Endometrial cancer patients and caregivers United States MED_6807
15-minute online survey, compensation is $25
X-Linked Hypophosphatemia (XLH) young adult patients and caregivers United States SHG_6813
60-minute web-assisted phone interview, compensation is $100
Rheumatoid Arthritis (RA) patients United States ATH_6685
30-minute web-assisted phone interview, compensation is $50
Non-Small Cell Lung Cancer patients United States CHP_6769
60-minute web-assisted phone interview, compensation is $100
Lupus caregivers United States CHTH_6734
30-minute web-assisted phone interview (Zoom), compensation is $50
Over Active Bladder (OAB) patients diagnosed with OAB and using “Implanted Sacral Nerve Stimulator” to treat their OAB United States DYN_6770
30-minute web-assisted phone interview, compensation is $50
Ulcerative Colitis (UC) patients United States DYN_6679
45-minute online survey, compensation is $75
Phenylketonuria (PKU) patients and caregivers United States SHG_6801
30-minute web-assisted phone interview (plus a 15-minute homework assignment), compensation is $50 for the interview and $25 for the homework (up to $75 total)
Gaucher Disease patients and caregivers United States BV_6806
60-minute web-assisted phone interview, compensation is $100
Sickle Cell Disease (SCD) caregivers United States JWW_6729
60-minute web-assisted phone interview, compensation is $150
Endometrial Cancer, Renal Cell Carcinoma, or Liver Cancer patients that are advanced/metastatic 1L or 2L United States HEU_6652
60-minute web-assisted phone interview, compensation is $100
Parkinson's Disease or PAH patients United States ATH_6596
60-minute web-assisted phone interview, compensation is $100
Rheumatoid Arthritis, Ankylosing Spondylitis, Psoriatic Arthritis, Crohn’s Disease or Ulcerative Colitis patients United States HSP_6799
60-minute web-assisted phone interview, compensation is $100
Ankylosing Spondylitis (AS) - non-Caucasian patients United States MCY_6639
60-minute web-assisted phone interview, compensation is $100
Short Bowel Syndrome (SBS) and/or Stroke adult patients who have started tube feeding within the past 12 months United States WMT_6678
50-minute web-assisted phone interview, compensation is $85
Human Growth Hormone Deficiency caregivers United States GP_6732
75-minute web-assisted phone interview, compensation is $125
Cervical Cancer patients United States GP_6587
60-minute web-assisted phone interview, compensation is $125
Breast Cancer (metastatic) patients United States MED_6615
30-minute online survey, compensation is $50
Prostate Cancer patients United States GP_6326 Wave 2
25-minute online survey, compensation is $50
HIV patients that are younger than 25 or older than 65 United States KPD_6494
30-minute online survey, compensation is $50
Vision Impairment patients and caregivers United States REAR_6318
30-minute online survey, compensation is $50
Primary Immunodeficiency (PID) patients and caregivers United States LE_6750
60-minute web-assisted phone interview, compensation is $100
Mantle Cell Lymphoma (MCL) patients United States SCH_6715
30-minute online survey, compensation is $50
Hemophilia A patients who are currently or have previously used Esperoct United States CR_6728
60-minute web-assisted phone interview, compensation is $100
Eosinophilic Esophagitis (EoE), and/or Short Bowel Syndrome (SBS), and/or Allergies patients and caregivers United States CUE_6725
20-minute online survey, compensation is $35
Lupus Nephritis (LN) patients United States AIS_6720
60-minute webcam interview, compensation is $100
Myopathy patients United States GP_6682
60-minute web-assisted phone interview, compensation is $150
Pancreatic Cancer patients and caregivers United States LAG_6718
60-minute web-assisted phone interview, compensation is $100
End Stage Renal Disease (ESRD) or Chronic Kidney Disease (CKD) patients and caregivers United States HFCS_6701
In-person interviews for those living near Manchester NH, two week long study consisting of approximately 35 hours on site in NH, compensation is $2000 for patients and $1500 for caregivers
Kidney Transplant patients and caregivers United States M3_6620
60-minute web-assisted phone interview, compensation is $100
Sickle Cell Disease (SCD) - non-Caucasian patients ages 18-25 United States ZS_6707
90-minute web-assisted phone interview, compensation is $150
Hidradenitis Suppurativa (HS) patients United States BPR_6675
30-minute online survey, compensation is $40
Idiopathic Pulmonary Fibrosis (IPF) patients age 50-70 and caregivers of patients age 50-75 United States BEE_6618
60-minute web-assisted phone interview, compensation is $100
Kidney Transplant - at risk for AMR (anti-body mediated rejection) patients United States GP_6555
90-minute web-assisted phone interview, compensation is $150
Colorectal Cancer (Colon Cancer) patients United States MVR_6671
90-minute web-assisted phone interview, compensation is $300
Ankylosing Spondylitis or Non-Radiographic Axial Spondyloarthritis patients United States M3_6617
60-minute web-assisted phone interview, compensation $100
Spinal Muscular Atrophy patients & caregivers (of infants) United States PSL_6574
60-minute web-assisted phone interview, compensation is $100
Narcolepsy Type 1 with Cataplexy male patients United States LR_6578
30-minute online survey, compensation is $45
Binge Eating Disorder patients United States HV_6546
30-minute screening call to determine eligibility for yearlong community that pays $100 per hour of participation. Compensation for the screening call is $35
Polymyositis patients United States TRP_6518
60-minute web-assisted phone interview, compensation is $100
Prostate Cancer patients United States GP_6565
60-minute web-assisted phone interview, compensation is $150
Prurigo Nodularis (PN) patients United States COM_6544
Online community compensation is $10 as a welcome when you join the community and participate in the community. Additional compensation opportunities will arise for community members that are active.
Pulmonary Arterial Hypertension (PAH) patients United States QUAM_6327
60-minute zoom interview, compensation is $100
Urinary Tract Infection (UTI) patients United States PHARV_6554
60-minute web-assisted phone interview, compensation is $100
Autosomal Dominant Polycystic Kidney Disease (ADPKD) patients United States IPS_6513
60-minute phone interview, compensation is $150
Breast Cancer patients United States ZS_6522
60-minute online forum, compensation is $100
Non-Small Cell Lung Cancer (NSCLC) patients United States LAG_6511
60-minute webcam interview (plus homework), compensation is $200
Paroxysmal Nocturnal Hemoglobinuria patients & caregivers United States TRI_6197
60-minuteweb-assisted phone interview, compensation is $100
WHIM Syndrome patients & caregivers United States RMR_6517
60-minute web-assisted phone interview, compensation is $100
Psoriasis patients United States GP_6305
30-minute online survey compensation is $50
Multiple Myeloma patients United States GP_6473
90-minute web-assisted phone interview (or two 45 min interviews if the patient prefers), compensation is $210
Burkitt Lymphoma or B-Cell Lymphoma patients United States RP_6484
2-minute online survey no reward
Hemophilia patients & caregivers United States REAC_6423
5-min online survey with no compensation (some participants may be selected for an in-person study)
Thyroid Eye Disease (TED) male patients United States 21G_6335
Year-long study (consists of 4 web-assisted phone interviews), payment upon completion of tasks
Liver Conditions - Autoimmune Hepatitis (AIH), Hepatitis B, Hepatitis C, NASH, NAFLD or Primary Sclerosing Cholangitis (PSC) United States XYZ_6258
150-minute online survey and daily diaries, compensation is $275
Uterine Fibroids patients United States IPS_6179
60-minute web-assisted phone interview, compensation is $100
Amyotrophic Lateral Sclerosis (ALS) patients & caregivers United States PICH_5650
5-10-minute online survey for medical history platform, compensation is $25
Pompe Disease patients United States PICH_5652
5-minuteonline survey for medical history platform, compensation is $20
Vulvar HSIL patients United States RTI_5017
30-minute online survey, compensation is $100
Psoriatic Arthritis, Rheumatoid Arthritis, or Ulcerative Colitis patients United States PHO_2397
30-minute online survey, compensation is $50
Organ Transplant patients United States AV_5244
60-minute phone interview, compensation is $120
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. RPV has paid patients over $8 million dollars since 2013 for participating in research studies.
