Let’s Get Started

Are you a patient or family caregiver with something to say? Make your voice heard by participating in paid surveys, interviews and online communities! Start talking to the right people. It's free! We accept rare and non-rare diagnoses! In celebration of our 10th Anniversary our studies now pay at a rate of $120 an hour! Sign up today!

About Our Referral Partner:

Hi, Jen here from My Spoonie Sisters. We are so glad to have you here. We think Rare Patient Voice is a great resource for those living with rare diseases. It provides an open space for people to connect and share their experiences, find support, and access helpful information. We love how it provides a safe space for people to talk about their conditions, and that it helps bring visibility to those living with rare diseases. WeÂre so glad youÂre here, and we canÂt wait to hear more about your experiences.

“There isn’t a more gratifying experience that I can think of that helps my own health and the health of others.”

— Indira, patient

“I like voicing my opinion and getting paid for it is a needed bonus.”

— Michelle, patient

“It was empowering to help inform people so that my learnings from this dreaded disease could help contribute to a greater good.”

— Nancy, patient

“I loved doing the survey – it was interesting and informative.”

— Karen, patient

“It is satisfying to know I can do my part to help get feedback to companies about our rare disease.”

— Angela, patient

“I appreciate that you allow us to participate in these studies. The money helps to pay my co-pays and I am grateful.”

— Jane, patient

“I love the way this organization treats me.”

— Marian, patient

“I enjoyed being the “expert” and being able to share some of my son’s story and our experience.”

— Abbie, patient

Let’s Get Started

Rare Patient Voice

For Patients

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Rare Patient Voice

For Patients

For Related Groups

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