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Author Topic: Rare Patient Voice  (Read 2094 times)

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Offline evergreenmom

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Rare Patient Voice
« on: November 03, 2014, 01:46:28 PM »
Rare patient Voice is helping patients(and parents/caregivers of patients) with rare diseases voice their opinions through surveys and interviews to improve medical products and services. Severe life threatening food allergy qualify as a rare condition.
 
I signed up recently and I receive a $10 Starbucks gift certificate by email and if I end up filling out a study questionnaire I will receive another $10 card. Additionally, if anyone here signs up and refers to me I will get another $10. card!! My name is Kristin Hubbard and my email is billygold003@hotmail.com so please refer to me when signing up.... Sign up today if you are interested in using your voice towards more knowledge about anaphylaxsis and food allergy and what individuals/families need from drug makers and medical product manufacturers!!
 
If you are interested in signing up and recieving a $10. Starbucks certificate by email just for signing up go to https://www.rarepatientvoice.com/sign-up/
 
If you wish to learn more about this awesome patient advocacy group go to their FB page:
https://www.facebook.com/rarepatientvoice
Me- allergic to MSG and mushrooms and possible gluten sensitivity

My son (born 3/08)- Peanut Allergy

Offline evergreenmom

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Re: Rare Patient Voice
« Reply #1 on: November 11, 2014, 02:21:29 AM »
Just wanted to add that you can request amazon gift certificates instead of Starbucks if coffee is not your thing!
Me- allergic to MSG and mushrooms and possible gluten sensitivity

My son (born 3/08)- Peanut Allergy

Offline SilverLining

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Re: Rare Patient Voice
« Reply #2 on: November 11, 2014, 06:39:35 AM »
Have you actually received your gift card yet?

I looked at the link and they are asking for a lot of personal information without actually promising anything.

Offline evergreenmom

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Re: Rare Patient Voice
« Reply #3 on: November 11, 2014, 11:19:19 PM »
Yes, I got a Starbucks gift certificate via email- I think about two weeks after I signed up. My friend told me about it so I felt it was trustworthy and also I looked over the Rare Patient Voice website and face book page and liked what I read about them.
Me- allergic to MSG and mushrooms and possible gluten sensitivity

My son (born 3/08)- Peanut Allergy