Rare Patient Voice

Spending the weekend in Fort Lauderdale and the Abilities Expo! If you are here, be sure to stop by and say hello!

We are excited to be headed to the Abilities Expo in Fort Lauderdale today! This event is an incredible opportunity to connect, learn, and celebrate the power of accessibility and inclusion. If you’re attending, stop by and say hello! We’d love to meet you!

Are you a patient living with a rare disease/chronic condition or a family caregiver?

You’re exactly who we’re looking for! Join our community, share your voice, and help us drive meaningful research. We can’t wait to welcome you!

Thanks for sharing!

My colleagues are on the move this month!
Brookelynn will be representing us at the Abilities Expo in Ft. Lauderdale. If you’re attending, be sure to stop by her booth and say hello!

A new season brings new possibilities. What changes, big or small, are you hoping to see in the months ahead?

You are not a failure for needing medication. You’re doing what you need to care for yourself.

Our Patient Advocacy Team is hitting the road for two events this week! ✈️ What’s your favorite part about attending patient or caregiver events learning, connecting, or sharing your story?

Caregivers, your stories matter too and you have a seat at our table!
What’s been your biggest challenge?

Unpopular opinion: Patients and caregivers are the REAL experts in healthcare. Change my mind.

So proud to share Pamela Cusick's ( our Senior Vice President) incredible news. She’s been named a Laureate by the Insights Association! This recognition from peers across the industry is such a well-deserved lifetime honor.

Are you part of Rare Patient Voice?

For many patients and caregivers, research from home isn’t about convenience, it’s about access. Living with pain, fatigue, or daily challenges, home is often the only place sharing their story feels possible. At RPV, every voice counts.

If you were given the choice between an online study, an in-person interview, or a web-assisted phone interview, which would you choose first?

Up to 30% of market research responses are fraudulent, costing millions and risking data reliability. Join Greenbook’s 9/25 webinar with RPV President Wes Michael to learn proven methods to combat fraud in qualitative and quantitative research. Reserve your spot today!

Reminder we will be closed on Monday due to the holiday. Hoping you all have a nice weekend!

Rare Patient Voice Rare Patient Voice helps patients and caregivers voice their opinions through surveys and interviews to improve medical products and services.

We are the matchmaker's! We connect patients and family caregivers to research studies! By signing up, you are giving yourself the opportunity to shape the future of healthcare through these studies!

rarepatientvoice.com

What's your fur babies name?

Have you completed a study with us?

#chronicillness

This is the hardest app.

Let's interact!
#chronicillness

Did you know you can shape the future of healthcare by joining Rare Patient Voice?!

Rare voices deserve the spotlight.
Patients and caregivers are our headliners.
Voices like yours make this era unforgettable.
#chronicillness #raredisease

Little off our normal topic, but LET'S GO Taylor Swift! My daughter started screaming so loud when the announcement was made about her new album! The internet was buzzing all day yesterday in anticipation and in true Taylor Swift fashion, she did not disappoint!

#lifeofashowgirl

Thank you for the response about how you can become a Weekly Warrior! There is still time if you would like to have your story shared!

You did it. You made it through another week! We are proud of you! Hoping you can find some time this weekend to recognize your accomplishments, no matter how small.

I have had the pleasure of sitting in on a few podcasts speaking on behalf of Rare Patient Voice. It's been so eye opening and such a great time! Do you have a podcast? I'd love to share your space and talk all things RPV!

We would love to share your story!

At Rare Patient Voice, we believe research becomes meaningful when it starts with listening to the child playing at recess, the parent juggling care and work, the adult learning to live boldly with a chronic condition.
Because every voice deserves to be heard.

#chronicillness #raredisease