What's New at Rare Patient Voice?
A Message of Thanks from Wes Michael
At Rare Patient Voice, our community is everything. We’d like to take a moment to thank you, the rare and non-rare disease patients, family caregivers, patient advocacy groups and members who have signed up with Rare Patient Voice. It’s our honor to help you share your voices with researchers and companies developing new products, treatments, and approaches to improve lives.
In this video , RPV President and Founder Wes Michael talks about how every voice matters, and the sincere gratitude we have for every member of the RPV community.
Record a Video, Receive a 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!
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
The NCBRS Worldwide Foundation is the only global organization supporting those affected by Nicolaides-Baraitser Syndrome, their families and carers, and the professionals who support them. We originally started as a parent support group in 2010 in the UK, after our Co-Founder Lee Reavey’s son was attending Great Ormond Street Hospital for Children (GOSH) in the UK, when he was noticed by a geneticist familiar with another NCBRS child and then clinically diagnosed and finally, a genetic diagnosis at the age of seven after the gene had been identified in 2012.
After many years and conversations between our Co-Founders, Lee Reavey and Helen Robinson, it was important to them to increase awareness and support and so it was decided to start a global organization. In June of 2020, this dream became a reality and the NCBRS Worldwide Foundation was established.
NCBRS is a rare genetic condition that is present at birth, is usually recognized during childhood, and can affect anyone. Currently, there are fewer than 250 confirmed cases worldwide. NCBRS is caused by a change in a gene called SMARCA2 located on chromosome 9.
Our vision is to create a global community where families, healthcare professionals and researchers work together to ensure that every person diagnosed with Nicolaides-Baraitser Syndrome has every opportunity to reach their full potential.
Our mission is to support and educate families, carers and professionals who work with them. Together we will work to promote awareness and understanding of the syndrome. We will advocate for scientific research that increases the medical knowledge of NCBRS and best treatments. Still, not a lot is known about NCBRS as it is still a fairly newly described syndrome. We encourage more people to learn more about NCBRS, as this could lead to someone’s diagnosis.
For more information, visit us at www.ncbrs.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
Paroxysmal Nocturnal Hemoglobinuria (PNH) patients and caregivers United States PICH_4376
This is a 5-minute survey for a medical history platform and the compensation is a $250 gift card to be paid by the client (after confirmation of diagnosis through medical records)
Alzheimer's Disease patients United States PICH_5649
This is a 5-minute survey for a medical history platform and the compensation is a $25 gift card to be paid by the client (after confirmation of diagnosis through medical records)
Lupus Nephritis patients United States PICH_6217
This is a 5-minute survey for a medical history platform and there is no compensation
Peyronie's Disease patients United States KLK_7040
8-hour in-person interview in Nashville, TN, compensation is $1200
Immune Thrombocytopenic Purpura (ITP) patients United States PICH_5647
This is a 5-minute survey for a medical history platform and the compensation is a $150 gift card to be paid by the client (after confirmation of diagnosis through medical records)
Non-Small Cell Lung Cancer (NSCLC) patients and caregivers United States M3_7112
60-minute web-assisted phone interview, compensation is $110
Alpha 1 Antitrypsin Deficiency patients United States GP_7043
60-minute web-assisted phone interview, compensation is $100
Endometrial Cancer patients and caregivers United States HEU_7068
60-minute web-assisted phone interview, compensation is $100
Mucopolysaccharidoses I (MPS I) patients United States ZS_7030
60-minute web-assisted phone interview, compensation is $100
Metastatic Breast Cancer patients that are female (other names for this condition are 'advanced' or 'Stage IV' Breast Cancer) United States MED_6615 W2
30-minute online survey, compensation is $50
Idiopathic Pulmonary Fibrosis patients United States SYFT_7016
45-minute web-assisted phone interview, compensation is $75
Food Allergy Caregivers of children that are between the ages of 1-17 United States CHP_7052
60-minute web-assisted phone interview, compensation is $100
Spinal Muscular Atrophy (SMA) Types 2 and 3 patients and caregivers United States HEA_6883
60-minute web-assisted phone interview, compensation is $100
Atopic Dermatitis (eczema) patients United States BRN_7058
45-minute online survey, compensation is $75
Limb Girdle Muscular Dystrophy (LGMD) and/or Miyoshi Mopathy patients United States BSG_7087
60-minute Zoom interview, compensation is $100
Small Cell Lung Cancer patients United States GP_7020
60-minute web-assisted phone interview, compensation is $100
Amyotrophic Lateral Sclerosis (ALS) patients and caregivers United States CHP_7089
60-minute web-assisted phone interview, compensation is $100
IgA nephropathy (Berger's Disease) patients United States PICH_7048
This is a 5-minute survey for medical history platform and the compensation is a $200 gift card to be paid by the client
Phenylketonuria (PKU) patients and caregivers United States COS_7046
30-minute online survey, compensation is $50
Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) patients and caregivers United States HOR_7078
90-minute web-assisted phone interview (plus a 30 min homework assignment), compensation is $250
Non-Small Cell Lung Cancer, Renal Cell Carcinoma, or Gastric Cancer patients United States COM_6940
10-minute online survey, compensation is $15
Non-Small Cell Lung Cancer patients United States JWW_6999
60-minute web-assisted phone interview, compensation is $100
Insomnia and Nocturia patients that are male (must be diagnosed with both of the conditions which are listed) United States GP_6784
90-minute web-assisted phone interview, compensation is $225
Kidney Disease, Lupus, Rheumatoid Arthritis, Gastrointestinal Diseases, COPD, or Cancer patients that are male United States EDEL_7017
15-minute online survey, compensation is $25
Ovarian and Fallopian Tube Cancer patients United States SHG_7025
60-minute web-assisted phone interview, compensation is $100
Clostridium Difficile (C Diff) patients and caregivers United States MVR_6906
Online community; community members can earn gift cards for completing activities; members may also be chosen to complete a 60-minute web-assisted phone interview for a $100 reward
Immunoglobulin A Nephropathy (IgAN) patients United States SCH_7010
60-minute web-assisted phone interview, compensation is $175
Infectious Disease study for those that have been diagnosed with one or more of the following conditions: Malaria, Hep B, Covid, long term/advanced Gonorrhea, or Chronic UTI patients United States DYN_7007
75-minute web-assisted phone interview, compensation is $125
Gaucher Disease patients and caregivers United States BV_6806 W2
60-minute web-assisted phone interview, compensation is $100
Multiple Myeloma patients and caregivers United States HV_6994
60-minute web-assisted phone interview, compensation is $100
Chronic Lymphocytic Leukemia (CLL) patients that have been on the medication Calquence United States BV_7013
100-minute Online Bulletin Board (OBB) (20-minutes per day for 5 days) plus a 45-minute follow up web-assisted phone interview, compensation is $170 for the OBB, and $75 for the interview
Endometrial Cancer caregivers United States BIO_6954
60-minute phone interview, compensation is $100
Non-Radiographic Axial Spondyloarthritis (nr-axSpA) patients United States COM_6939
This is a 5-minute online survey application to join an online community, compensation is $10 to those that are accepted into the online community
Amyotrophic Lateral Sclerosis (ALS) patients and caregivers United States GP_6974
60-minute web-assisted phone interview, compensation is $100
Interstitial Lung Disease (ILD) patients United States IPRE_7006
60-minute web-assisted phone interview, compensation is $100
Glaucoma patients United States SHG_6976
60-minute web-assisted phone interview, compensation is $120
Dermatomyositis and/or Myopathy patients United States IPS_6891
60-minute web-assisted phone interview, compensation is $100
Eczema patients United States GLG_6956
10-minute online survey, compensation is $20
Bipolar and/or Schizophrenia patients that are male United States GP_6841
20-minutes online survey, compensation is $35
Crohn’s Disease, Ulcerative Colitis, Chronic Pancreatitis, or High Output Fistula - patients & caregivers from Atlanta (GA) or Houston (TX) United States CRMR_6905
2-3 hour in-person interview (in Atlanta or Houston), compensation will be $300 for 2 hours or $450 for 3 hours
Huntington's Disease patients United States PICH_6842
This is a 5-minute survey for medical history platform and the compensation is a $200 gift card to be paid by the client
Becker Muscular Dystrophy patients and caregivers United States CLA_6852
45-minute web-assisted phone interview, compensation is $75
Sickle Cell Disease (SCD) male patients United States VCN_6893
60-minute in-person interview in Atlanta, Miami, New York City, Los Angeles, compensation is $150
Ascites patients with catheters United States KEYT_6809
75-minute web-assisted phone interview, compensation is $175
Head and Neck Cancer patients United States JWW_6793
60-minute web-assisted phone interview, compensation is $100
Mantle Cell Lymphoma, Follicular Lymphoma, or Diffuse Large B-Cell Lymphoma patients United States HEU_6836
20-minute online survey, compensation is $35
Aromatic L-amino Acid Decarboxylase Deficiency (AADC) caregivers United States ZS_6655
60-minute web-assisted phone interview, compensation is $100
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
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
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
Urinary Tract Infection (UTI) patients United States PHARV_6554
60-minute web-assisted phone interview, compensation is $100
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
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
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
Psoriatic Arthritis, Rheumatoid Arthritis, or Ulcerative Colitis patients United States PHO_2397
30-minute online survey, compensation is $50
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 $9 million dollars since 2013 for participating in research studies.
