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 Sickle Cell Disease to share some words or perceptions that make them cringe when other people talk about their condition. Here are a few of their responses:
- “I think the thing that makes me cringe also is that people believe that it is a Black disease and it’s not, and that people believe that sickle cell patients are drug seekers and that we fake our pain.”
- “The word, sickler, like healthcare professionals or someone else refer to you as a sickler, that word is kind of derogatory towards a person with sickle cell disease.”
- “Some words that people say about me, mostly doctors and nurses. She’s a drug addict. She’s a pill popper, drug seeker. She’s an addict.”
- “‘Are you really in pain I don’t see, you look fine to me. You don’t look like you’re in pain or you don’t look like you don’t feel good.’ How dare you judge how I feel based off of my looks. And that’s another thing, we get judged off of our looks when we go into the emergency room to go get treated.”
- “I wish people wouldn’t call us sicklers. I mean, individuals who have cancer, they don’t call them cancers people. I also don’t like that… I suppose all patients are classified as drug addicts or drug seekers.”
Tell Us Your Story!
Share Your Voice and Receive Rarity the Zebra
Who knows more about your life than you? Patients and caregivers are on the frontlines of life with a specific disease or condition, and your perspectives and experiences are valuable! At Rare Patient Voice, we connect you with opportunities to share your input and opinions with researchers and companies developing products to improve patients’ lives. Now you can help us spread the word so more people can start sharing their voices!
We are asking our patient and caregiver members to record a short video about your experience with RPV. Using the Storyvine app, the process of recording a video on your phone is easy, fun, and takes only a few minutes. Your videos will be featured on our website, on YouTube, social media, and in newsletters!
Check out some of the great videos submitted so far here: 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
Step 3: Film and upload your video!
To thank you for recording a video, we will send a Rarity zebra plushie to everyone who records a video through the app AND you will also be entered into a raffle to win a $100 Amazon gift card!
We are happy to announce that our first raffle winner is Meghan! Congratulations!
Partner Corner
THE STROKE RECOVERY FOUNDATION
Our mission is to help achieve YOUR stroke success:
- Success in preventing a stroke – professionals say 80% of strokes are preventable.
- Success in recognizing the signs and symptoms of stroke so that you can respond both rapidly and smartly.
- And should you suffer a stroke, success maximizing your recovery to create an independent and fulfilling “New Life.”
Our vision is to reduce the negative impact of stroke by a factor of 25% by 2030 in SW Florida and across America! For more information, go to https://strokerecoveryfoundation.org/.
Save a Life – Improve a Life!
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 $10 for everyone who signs up through your link!
Become a Referral Partner!
Current Study Opportunities
We currently have over 230 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!
United States
Mantle Cell Lymphoma Patients United States MO_4159
60 min Web-Assisted Phone Interview and Compensation is $100
Spinal Muscular Atrophy Patients 18-90 and Caregivers of patients 0-17 United States ZS_3610
30 min Online Survey and Compensation is $50
Organ Transplant Patients United States AV_5244
60 min Phone Interview and Compensation is $120
Respiratory Syncytial Virus Caregivers United States MCY_5250
90 min Phone Interview and Compensation is $150
Huntington Disease or Tardive Dyskinesia Patients United States M3_5317
75 min Phone Interview and Compensation is $125
Myelofibrosis Patients United States COS_5438
90 min Web-Assisted Phone Interview plus 2 Online Surveys and Compensation is $200
Behavioral Variant FTD Caregivers United States GP_5476
90 min Web-Assisted Phone Interview and Compensation is $150
Soft Tissue Sarcoma Patients United States MO_5281
90 min Phone Interview and Compensation is $150
Lung Cancer - African American / Ages 50 – 75 Patients United States SEEK_5513
60 min Web-Assisted Phone Interview and Compensation is $100
Wilson's Disease Patients United States CHP_5735
60 min Web-Assisted Phone Interview and Compensation is $100
Alzheimer's, Dementia Caregivers United States GP_5495
60 min Phone Interview and Compensation is $125
Colorectal Cancer Male Patients United States GP_5406
90 min Phone Interview and Compensation is $200
Tardive Dyskinesia Caregivers United States SCH_5784
60 min Web-Assisted Phone Interview and Compensation is $100
COVID-19 Patients United States
60 min Web-Assisted Phone Interview and Compensation is $100
Epilepsy Caregivers of patients ages 7-25 in the Seattle Area KRICE_5830
90 min In-Person Interview and Compensation is $250
Bacterial Pneumonia and/or Bacterial Skin Infections/Wounds Patients United States M3_5852
60 min Web-Assisted Phone Interview and Compensation is up to $150
Membranous Nephropathy Patients and Caregivers United States M3_5734
120 min Web-Assisted Phone Interview and Compensation is $250
End Stage Renal Disease (ESRD) Patients and Caregivers United States M3_5874
60 min Web-Assisted Phone Interview and Compensation is $200
Spinal Cord Injury Patients and Caregivers United States KSR_5802
60 min Web-Assisted Phone Interview and Compensation is $100
Cystic Fibrosis Patients and Caregivers United States PHA_5351
90 min Phone Interview and Compensation is $150
Complex Regional Pain Syndrome Patients United States GLOM_5902
45 min Web-Assisted Phone Interview and Compensation is $75
Prostate Cancer Patients United States GP_5388
30 min Online Survey and Compensation is $50
Small Cell Lung Cancer Patients United States SCH_5911
75 min Web-Assisted Phone Interview and Compensation is $125
Ovarian Cancer Caregivers United States M3_5834
75 min Web-Assisted Phone Interview and Compensation is $125
Thyroid Eye Disease (TED) Patients United States SRI_5884
20 min Online Survey and Compensation is $35
Diabetes Type 1 Patients United States GP_5878
30 min Online Survey and Compensation is $50
Gaucher Type 1 Patients and Caregivers United States SER_5747
35 min Online Survey and Compensation is $55
Alzheimer’s Patients United States RICE_4251
15 min Online Survey and Compensation is $25
Lupus Patients United States GP_5941
90 min Web-Assisted Phone Interview and Compensation is $125
Narcolepsy Patients United States INV_5944
15 min Online Survey and Compensation is $25
Hypersomnia Patients United States INV_5944
15 min Online Survey and Compensation is $25
Facioscapulohumeral Muscular Dystrophy (FSH) Patients and Caregivers United States FP_5956
60 min Web-Assisted Phone Interview and Compensation is $100
Breast Cancer Patients United States EMI_5906
20 min Online Survey and Compensation is $50
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
Migraine Caregivers of patients ages 12-17 United States SRI_5954
45 min Web-Assisted Phone Interview and Compensation is $75
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
Prurigo Nodularis Patients United States HOR_5974
60 min Web-Assisted Phone Interview 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
Breast Cancer Patients United States MVR_5942
60 min Web-Assisted Phone Interview and Compensation is $200
Warm Autoimmune Hemolytic Anemia (WAIHA) Patients United States HG_6011
60 min Web-Assisted Phone Interview and Compensation is $100
Breast Cancer Triple Negative (TNBC) Patients United States SHG_5981
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
Major Depressive Disorder Patients United States BRN_5994
45 min Online Survey and Compensation is $75
Ovarian Cancer Patients United States IPS_5070
15 min Online Survey and Compensation is $25
Epilepsy Female Patients United States IPS_5978
120 min Web-Assisted Phone Interview and Compensation is $125
United Kingdom
Soft Tissue Sarcoma Patients United Kingdom MO_5281
60 min Phone Interview and Compensation is 108 GBP
Canada
Organ Transplant Patients Canada AV_5244
60 min Phone Interview and Compensation is 80 CAD
Germany
Hepatitis D Patients Germany GEN_6009
60 min Phone Interview and Compensation is 80 Euro
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!
