Rare Patient Voice: Survey Panel for Patients w/ Rare Diseases & Caregivers (Sign Up & Get $10 Gift Card)
UPDATE (June 2015): Rare Patient Voice now offers qualified patients a $5 gift card of their choice after joining.
Do you or a family member suffer from a rare disease? Or are you the caregiver of someone who suffers from a rare disease? If so, you may want to take a few minutes to check out Rare Patient Voice.
Rare Patient Voice was formed to provide patients and caregivers with rare diseases an opportunity to voice their opinions through surveys and interviews in order to improve medical products and services. Qualified patients will receive a $10 gift card $5 gift card of their choice after joining and will then receive cash rewards after completing a survey or questionnaire. Plus, if you refer qualified patients to sign up (and they enter your first and last name in the Referrer fields) then you will receive a $10 gift card $5 gift card.
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Check out the email from Hip2Save reader, Tiffany, who is currently a Rare Patient Voice member…
There is a company called Rare Patient Voice that does surveys and interviews for people with rare diseases about their medical care, quality, and services. This is not just for people who have the condition, but also for their caregivers. Each time you fill out a questionnaire or survey, you get a bit of financial compensation. About a month ago, patients with Ulcerative Colitis received $250 for just one survey!
When you first sign up, you get a $10 Amazon gift card. Then anyone who signs up and puts your name as a referral – you both get another $10 gift card. I personally have Crohn’s disease. I received $20 because I signed up and then my husband signed up under me. I haven’t taken any surveys yet, so I’m not sure how much compensation you get for each one, but this is really legitimate in what/how much I’ve gotten so far.
Some of the many diseases that qualify as “rare” are:
Bleeding Disorders
Multiple Sclerosis (MS)
Cystic Fibrosis
Sickle Cell Disease
Huntington’s Disease
Pulmonary Arterial Hypertension (PAH)
Waldenstrom’s Macroglobulinemia (WM)
Lupus
Gaucher
Duchenne Muscular Dystrophy
Hepatitis C
Crohn’s Disease
If you do decide to sign up, I’d love it if you put Tiffany Thomas as your referral so I can get credit for it![/h2s_box]
Thanks for posting Collin! I just applied and put Tiffany as the referring party.
You’re welcome, Melissa! I appreciate that. 🙂
I also applied, I have MS. I put Tiffany down too.
I’m sorry to hear you have MS and hope you feel better!
Maybe something good can come from having lupus after all! 😉
I was just thinking this! I have Interstitial Cystitis & it SUCKS! It’s nice to maybe get something good out of it even if it’s something small like this;) Tiffany I used you as my referral. Hopefully you get the credit though because your’s is a common name, so I hope it doesn’t go to a different Tiffany with the same last name!
I have Interstitial Cystitis too and you’re right, it does suck! It’s awful feeling like you have a UTI all of the time. I also have as rare mammal meat allergy called Alpha Gal. They believe it is caused from tick bites. I think I am one of the first people in the country to have it. I got it in 1978, but was only formally diagnosed in 2013. The researcher only knew of one case before mine. This allergy is spreading so please wear repellant when you are in the woods. Believe me, you do not want this.
I’d love it if someone could use me as their referral. skittlebees@gmail.com Thank you so much!
I have dystonia– which no one has ever heard of. This is great!
is that the same thing as autonomic dystonia?
what type of dystonia i also have it
i have POTS, Autonomic dysfunction or dysautonomia which ever you like to call it!
if anyone will to share $5 Amazon GC..i will use you as a referrer on my new signup..so that you get $10 Amazon GC
I signed up as caregiver for my husband who has Lupus. Since there aren’t that many men with it, maybe we will qualify. I put Tiffany as my referral.
Thank you for sharing. I used Tiffany as my referral. I have a rare immunodeficiency and look forward to participating if they think I qualify!
Thank you for posting this. I just signed up because my daughter has Pulmonary Hypertension. My only request is that only people who genuinely qualify apply for this. I would hate to see this great opportunity for medical and quality of life advancement disappear because of fraud or abuse. And I’m not accusing anyone of doing that right now, I just know how tempting things can be when we are looking for a deal or freebie. Many people that have these diseases face serious issues, and in my daughter’s case a shortened life. i just wanted to put the request out there that we be mindful of this when signing up.
my daughter has ph also…prayers for your little one…..this is a rough road we have been entrusted with.
They have checks in place to make sure that you are genuine in doing what you say you’re doing. They’ll check your email based with your answers, and if they have any doubts about you, they’ll send you an email with a couple of questions about it. I am so sorry for your daughter.
This is great. I just got diagnosed with Epilepsy. I put Tiffany down 🙂
Ditto on epilepsy 🙁
I didn’t know epilepsy was on the list. I’ll have to sign up now. Sending love to all of my fellow seizure sufferers.
I signed up under your name Tiffany. If someone would like to use my name, I would really appreciate it! Jo Womeldorff
Thanks.
Does anyone know if this company keeps your information confidential?
I used your name, Tiffany.
My daughter has Short Gut Syndrome. So thank you very much! I hope we qualify because the only known “cure” right now is intestinal transplant and the success is less than 50%. She has defied odds so far. She was on life support at one time and made it. She is almost 6 and started kindergarten and we were told she had less than a 20% chance of living to see age 5.
I have Crohns and signed up. I have made about $35 recently from two surveys, one from Humira and one from Walgreens Specialty Pharmacy. This wasnt because of this app, but there is interest out there. Fellow Crohnnies may also participate in a DNA research by 23andme that they are doing to identify all the genes involved in other Crohns symptoms like joint pain. After all, they have found more genes involved in Crohns than any other disease. If you give your sample, they give you your ancestry and connections with other relatives for free!
I don’t have Crohns but that is very interesting information. I’ll be sure to pass it on to a friend. Thank you.
Jo W., I signed up with you as my referrer.
For once my hemophilia is going to do something good for me!
Catherine, what kind of hemophilia do you have? I’m going to sign up as caregiver for my son, who has severe A. Can I have your name to use you as my referral?
Please use me as a referal. Stephen Bean!
I used you as my referral Stephen Bean. Would someone be so kind to use me, Rebekah Schautteet?
I have pseudotumor cerebri, which I’d assume is probably “too rare,” but worth a shot! Put Tiffany down too.
Oh Maria that makes two of us.
I used Jo W. as my referral. I would appreciate someone using me as their referral too (Gina Sifford). Thanks!
I never thought I would be happy to say I have Ulcerative Colitis.
I would be happy to have someone use me as a referral Suzanne Shenkman
slshenkman AT yahoo DOT com
I also have ulcerative colitis! Struggling for a while but diagnosed finally this Jund after the birth of my 3rd child. I listed you as referral Suzanne! I would appreciate it if someone would also use me heather wainwright 🙂
I have UC too. I guess I could say I “had” UC, because I had a total colectomy with an ileostomy. Going back for the 1st of two reversal surgeries in 8 days & scared to death. My last hospitalization required life support.
I work for a national market research firm and we are always looking for new panelists to join our database. We conduct all kinds of studies (discussing medical conditions, every day consumer products/services,etc.). Check us out: http://www.inspiredopinions.com When we get you involved in a study, we always pay you for your time!
i dont know that i will qualify but i used Tiffany as a referral
I’d love it if someone could use me as their referral. I used Tiffany’s:) Thank you so much! skittlebees@gmail.com
Thank you for posting this. I sent it to my best friend who has MS and her daughter has PWS ( Prader Willi Syndrome).
This looks fishy to me. I would be cautious about giving this type of info out. $10 is a flimsy payout for this type of info and you do not know what this market and research company is doing with it. Just saying! $10 is nice but not worth giving out you/your families personal medical info.
When you sign up, you do not give very much information – you just give what condition you have a little bit about how you were diagnosed. That’s used to screen people to make sure they’re legitimate. You also only give your email address, and that is to get your $10 card and also emails about surveys. I have been a member for about 6 months now and have had no identity problems. I also have personally spoken with the CEO, Wes Michael, both via email and over the phone when I had questions. When I first heard about it, I did some research into it and could find no claims of fraud relating to the company.
I signed up for my mother who has lupus. I used Tiffany’s as a referral, if someone can use me as a referral- cosmogirl56@hotmail.com
I have Ehlers-Danlos as well as Hidradenitis suppurativa. Anyone else? Feel free to use my name as well. Thanks! Lyndi Hedgecock 🙂
lyndi- how long did it take you to get diagnosed with Ehlers-Danlos?
i have P.O.T.S and dysautonomia and i think i have ehlers-danlos, i have all the signs but im having trouble finding a doctor
i have crohn’s disease, have had 2 bowel resections and multiple meds, also have sarcoidosis, i used Rebekah Schautteet as referral, can someone use me please. vicki moyer-parsons, vickilmp@aol.com. thnak you
HI. please let Tiffany know I signed up and used her as a contact referral. I will be forwarding this site to a few family members and friends who also have disorders and rare conditions. Thank you for bringing this site to my attention!
I have psoriatic arthritis and signed up. I used Jo Womeldorff as a reference. Would someone please use mine? My last name is Cunningham. cunninghamcl AT mail DOT com
Thanks!
Thank you for posting this. My daughter was just diagnosed with a Chiari Malformation two weeks ago.
Just signed up, if anyone is willing can you put me down as a referral, TIffany English email is mte7789@yahoo.com it would be greatly appreciated. Thanks everyone!
Wow. Really shocked there’s anything like this. My husband has narcolepsy and ulcerative colitis
Cool, thanks! We have two rare diseases in our family. Daughter has X-Linked hypophosphatemia, and my husband has Alpha 1 Antitripsyn deficiency. Most people have never heard of them. Hopefully they qualify.
I have CIDP and would love to participate
Cidp
Hi. I used Tiffany as my referral source. I have a meningioma (brain tumor) and thyroid cancer. I’d love it if someone used me as their referral source. Kris Russell TIA
Has anyone heard back from them? I mean the company..like got their gift card or even a yes you fit the criteria or not. I have Lupus, Fibromyalgia, and Occular Myasthenia Gravis & I haven’t heard a word.
It takes several days for them to process things. They try to check that you aren’t a scammer, etc. The CEO was also at a funeral and a conference all last week (I emailed him to let him know that this article had been posted). So it’s taking a bit longer.
Thanks for the info! I’m sure they received many new requests after this was posted.
I just got my gift card yesterday!
My daughter has tuberous sclerosis and epilepsy. She is 18 now.
got my gift card yesterday!
I got my gift card!
Got my gift card! If anyone’s is still signing up i would really appriciate if you can use my referral buttercup.bella2013@yahoo.com thank you!