Change to Gift Card Values for Online sign-ups

We are proud that with the help of many of you we have sent gift cards for more than $92,000 to new patients/caregivers and referrers in 2014.  I wanted to let you know of a change to our policy before it goes into effect on January 1, 2015. At that time, the value of the gift cards will be $5 (instead of $10) to all new patients and caregivers who sign up on line at www.rarepatientvoice.com/sign-up, and also to all referrers. The reasons we are making this change are:

  • To continue to welcome new patients and caregivers across most rare disease categories, even if we don’t currently have request for surveys among those patients
  • Believe it or not, we continue to receive many fraudulent entries on line; we need to discourage that so that we can continue to provide the gift cards to legitimate patients and caregivers

For new patients and caregivers, they will still be given the choice of Amazon, Starbucks, or Dunkin’ Donuts gift cards. The new rate of $5 will be clearly stated on the website. Referrers will continue to receive Amazon gift cards.

There will be no change to the cash rewards provided to patients or caregivers for completing surveys. That will continue to be about $100 for each hour of their time. We are proud that we have paid over $250,000 to patients and caregivers in 2014 for completing surveys. An even greater value has come from the results of these surveys helping the sponsors to improve medical products and services.

Please encourage those you have referred to sign up by December 31, 2014 so that you and they will receive $10 gift cards.

Those who sign up in person at patient events will still receive a $10 gift card.

About the author: Wes Michael, President and Founder of Rare Patient Voice, has been involved in rare and orphan diseases since 1998, interviewing and surveying patients, caregivers, physicians, nurses and advocacy leaders. Wes has more than 30 years experience in marketing research, and more than 15 years in healthcare marketing research.

{ 12 comments… add one }
  • Tammy December 28, 2014, 12:42 pm

    Im living with Syringomyelia. A rare disorder in which im actually getting ready to have my small intestine removed because my internal organs are being affected by this thing.. Not to mention everything else that this thing brings, paralysis, severe nerve damage etc etc etc. To see that there are people in the world who seriously scam forums for a gift card is ridiculous. It irritates me. If they only knew the pain that never goes away, the loss of the ability to use your legs at a very young age, to be helpless and have to depend on someone to help you do the simplest of tasks… Or even to try to get drs to try to listen to you and not ignore your disorder… But most of all, like in my case.. As im slowly deteriorating within trying to get to another state so i can finally get some help with this because drs in my area have absolutely no clue about this rare disorder so they just shove you through painful testing testing for other stuff, ignoring the patient.. Etc. Ohhh thats funny to them? Just to get a gift card? Thats so sad!!! It really does anger me to no end. Ugh.

  • LARRY BOYD January 13, 2015, 2:18 am

    Attempting to be a caregiver/advocate for 14 HD patients who are also my relatives….from sister, to niece/nephew to 2nd/3rd cousins who descend from my mother and aunt. Most unique aspect of this story is that we are an African American family so deeply affected by this devastating disease. I too am angered by the “fraud mongers” who would try to bilk a worthy site like RPV out of a $10 gift card. There are so many facets and challenges to this disease and the caregiving issue. For instance, trying to convince my niece to give up driving when she recently bought a brand new car or trying to help my nephew get moved from an upstairs condo as his involuntary movements increase the danger of his falling down his stairs and suffering possible fatal injuries. Watch for our story on YouTube and other media outlets as our story unfolds.

    • signal.co October 11, 2016, 1:37 am

      Herkullinen glögiresepti! Keittelen itsekin aina mausteista ja voisi olla kiva kokeilla vaihteeksi vähän erilaista, en nimittäin koskaan laita sitruksia.Tosta Valion aspartaamiglögistä: Oonko ihan väärässä kun muistelen, että aspartaami hajoaa kuumennettaessa mm. metanoliksi eli hengenvaaralliseksi? Asteitakin piti olla muistaakseni melko vähän, joku reilu 30. Jos siis olisin laiska, valitsisin ennemmin sokerisen valmisglögin kuin aspartaamiglögin.

    • http://www./ October 23, 2016, 6:29 am

      Moi, I am planning some loafing about on the sofa, some psychotherapy homework (perhaps), popping to the Sage to buy some music tickets for next year (my home is also full of music (and other) clutter, but no gold discs!), and a foray to the pub to buy my leek club raffle tickets!I live it large.I am also recovering from the cold and hope you feel better very soon, beautiful Vixen, but the picture of your tortoise munching lettuce in the living room yesterday didn't half make me feel much better. Thank you! Mwah!

    • arcadeturbo.com November 6, 2016, 7:58 pm

      An alle, die Kommentare schreiben: Jetzt sind es schon 50!!!! Ich bin begeistert!!! Seit nicht boese, wenn ich nicht auf jeden Kommentar reagiere. Das Blog zu schreiben ist schon ganz schoen stressig! Freue mich auf den naechsten Kommentar!Liebe Gruessehelmut op tour

    • http://www./ November 13, 2016, 9:53 am

      For me the right time and place is in silence. I imagine we all take dictation when it’s offered, on any surface from receipts to skin, but I try to keep to an early-morning schedule because it’s quiet then. I’m usually at my kitchen table, but only because of the hour and my age. Place matters, but in another way; where I’m writing often enters or steers the poem as tone or mood. When the mood is circled by quiet it dresses in words.

    • We’ve covered Earthlink’s Wi-Fi foray into New Orleans here before, but I have to say, I was really thrilled to see this on my door! They’re here, we have an alternative high speed connection to Cox and Bellsouth, and even more importantly, the company has followed through on it’s pledged commitment to New Orleans.

    • bank studienkredit telefonnummer February 7, 2017, 11:20 am

      Your answer was just what I needed. It’s made my day!

  • Beverly Mitchell April 14, 2015, 8:27 pm

    Hope my experience here with the studies that I may qualify for, help research put MORE avaliable knowledge into society.

  • Denise Muller July 13, 2015, 4:08 am

    The surveys have been interesting. I enjoy doing them and providing help for the MS Community. I am always ready to do what I can. It is very important for those of us afflicted with a rare disease or a caregiver to get involved in any way you can to contribute and educate.

  • Tammy Clegg August 26, 2015, 2:30 pm

    I am an MS patient, but also suffer with Wolf Parkinsons White Syndrome, I have had two strokes and every day is a challenge. I appreciate the help from surveys, blogs and any other forum that can help us make sense of our conditions. Thank you RARE PATIENT VOICE.

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