Tiffany emailed in the following tip:
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.
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 just 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.
The 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 (I’m guessing UC counts as well)
If you think that either you or the person you care for has something that qualifies as rare, you can apply here, and then explain why you think you qualify. (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!) -Tiffany
Wes Michae says
Hi, I’m Wes Michael, the president of Rare Patient Voice. Thanks for all of your interest! We determine what conditions qualify by what surveys our sponsors are asking us for. I must say, all of your sign-ups have buried us, so bear with us as we go through them to get your gift cards. Unfortunately, we’ve had a lot of fraud (people just trying to get gift cards that don’t have a rare disease) so we go through them individually and often call to verify the information.
katie martin says
Thank you.
Amanda says
Thanks Tiffany! Our newborn was recently diagnosed with Cystic Fibrosis. It’s incredible the amount of support we’ve found!
Tiffany Thomas says
I am so sorry for the diagnosis. 🙁 It’s heartbreaking when it’s your baby. But I’m so glad that you’ve found support! it’s one of the wonderful blessings of modern technology.
grace says
my son has Cerebral Palsy and that isnt listed either….. their definition of “rare” is quite limited 😀
Tiffany Thomas says
The list of what qualifies as rare has been taken down from their site; they now say, “Rare Patient Voice is always looking for patients and caregivers in various rare, orphan and special disease categories. However, not all disease categories will qualify. If you are interested, sign up and we will let you know if you qualify.”
So go ahead and sign up, anyway!
Kate says
None of my ailments are on their list, either – I’d love to make a little money of of THEM(my illnesses) for a change – but I did send the information to a couple friends who, unfortunately, so have listed conditions.
Tiffany Thomas says
The list of what qualifies as rare has been taken down from their site; they now say, “Rare Patient Voice is always looking for patients and caregivers in various rare, orphan and special disease categories. However, not all disease categories will qualify. If you are interested, sign up and we will let you know if you qualify.”
So go ahead and sign up, anyway!
Sam Ross says
Thank you so much for posting this! I was diagnosed with PAH (pulmonary arterial hypertension) 4 years ago and I feel like an outcast – no one knows what it is! It was comforting for me just to SEE PAH in the list. I’m signed up and I put your website down. Thanks again!
Pamela says
Are rare syndromes included??
Tiffany Thomas says
I think so.
The list of what qualifies as rare has been taken down from their site; they now say, “Rare Patient Voice is always looking for patients and caregivers in various rare, orphan and special disease categories. However, not all disease categories will qualify. If you are interested, sign up and we will let you know if you qualify.”
So go ahead and sign up, anyway!
Kym says
Are these the only rare diseases they are looking for? I don’t see a list anywhere on the site, but I may have just missed it. My daughter has one that is listed above, but she also has other extremely rare conditions.
Tiffany Thomas says
The list of what qualifies as rare has been taken down from their site. It used to show up on the Sign-Up page. They now say, “Rare Patient Voice is always looking for patients and caregivers in various rare, orphan and special disease categories. However, not all disease categories will qualify. If you are interested, sign up and we will let you know if you qualify.”
So go ahead and sign up, anyway!
Diane says
I was hoping glaucoma would be on the list. But I’m counting my blessings that I don’t have any of the other illnesses on the list.
Crystal Paine says
Such great perspective! Thanks for sharing!
Tiffany Thomas says
The list of what qualifies as rare has been taken down from their site; they now say, “Rare Patient Voice is always looking for patients and caregivers in various rare, orphan and special disease categories. However, not all disease categories will qualify. If you are interested, sign up and we will let you know if you qualify.”
So go ahead and sign up, anyway!
Lisa says
Thanks for the tip! My husband just got diagnosed with Crohn’s disease so this opportunity came at a great time–we are still navigating through the illness. He has felt so sick for so long–I’m happy to surprise him with a little gift card. It won’t take away the illness but it will be a nice little surprise!
Tiffany Thomas says
I am so sorry for your husband’s diagnosis. I also have Crohn’s Disease, and it’s had some challenges. I hope that he gets into remission soon.