Rare Patient Voice: Survey & Interview Panel for Patients with Rare Diseases & Their Caregivers


As many of you know I was diagnosed with Multiple Sclerosis about 7 years ago, so this post is close to my heart.  It is only in the last few months that I found out about Rare Patient Voice and started participating in surveys and interviews.

Rare Patient Voice offers  patients and caregivers with rare diseases an opportunity to voice their opinions through surveys and interviews to improve medical products and services. The average compensation for these surveys or interviews is around $100 per hour.  Here are diseases that qualify as rare:

  • 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

You will get a free $5 amazon gift card for signing up. Which is a nice bonus, but not the most important reason to join.  Also if you put my name, Katie Van Dyke, in the who referred you box I will get a $5 gift card.  Still, that is not why I am sharing this information. 🙂

I think it is important for patients and caregivers to let companies know what is working and what is not. It is important to help them refine products and services so it can benefit more people.

I have qualified for two surveys thus far and have received my checks in a very timely fashion. I have total confidence in this survey company. So, if you have or care for someone that has a qualifying disease sign up and start earning and helping.

If you haven’t see it here is an interview I did with WBIR about my MS  and here my Your Stories interview where I talk about how MS helped get me starting with coupons.

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