Rare Patient Voice

Know someone who belongs here?
Refer them to RPV. Once their registration is verified and they are accepted into our panel, you’ll receive a referral reward.
It’s that simple and it helps grow our community.
Submit a referral and help us expand our panel. You must have a referral link!

Join on all month long as we share patient stories and so much more!

Rare Patient Voice is Acquired by Konovo, a Technology-First Healthcare Intelligence Company - Rare Patient Voice Konovo Achieves Significant Milestone in Connecting Patient and Healthcare Provider Insights with Rare Patient Voice Acquisition Rare Patient Voice’s 200,000+ registered patients and caregivers expand...

BIG NEWS!!! rarepatientvoice.com/rare-patient...

Rare diseases impact millions of individuals and families, and awareness plays a critical role in access to care and support.
partners, our Rare Disease Month social media kit will be arriving in your inbox soon!! Designed to make it easy to share meaningful, impactful content throughout February.

For qualifying referrals you receive $10 USD for every referral. Our payment options have changed recently for other countries please take a look at this graphic to see the changes.

We are the matchmakers! We connect patients and caregivers to research studies!!

Research is important because it turns lived experience into understanding and understanding into change.
Without it, too many voices go unheard.

With the holiday season upon us, we wanted to share our adjusted hours. We’re grateful for our clients, partners, patients, caregivers, and team! Happy holidays!

When you buy items from the Rare Patient Voice store, 100% of the profit goes to support Honeycomb Health’s program to build free stores for rare disease advocacy and support groups!!

#rarepatientvoice

FLaB background w/ promo for RPV gig. Text reads: Since 2013, Rare Patient Voice has awarded patients and caregivers over $15,000,000! Rare Patient Voice is looking for patients for a PAID opportunity to share their experience WHO Patients diagnosed with Rheumatoid Arthritis WHAT 30-60 minute initial interview COMPENSATION $120 Visit rarepatientvoice.com/Buttahfly for details.

@rarepatientvoice.bsky.social is looking for patients for a PAID opportunity to share their experience
WHO: Patients diagnosed with #RheumatoidArthritis
WHAT: 30-60 minute initial interview
COMPENSATION: $120
Visit rarepatientvoice.com/Buttahfly for details
~🦋
#arthritis #ChronicIllness #SpoonieSky

Research turns curiosity into knowledge, knowledge into action, and action into progress.

If we stop asking “why,” we stop moving forward.

Did you know we have RPV merch! When you buy items from the Rare Patient Voice store, 100% of the profit goes to support Honeycomb Health’s program to build free stores like this one for rare disease advocacy and support groups.

The Abilities Expo is officially awaiting the arrival ofRPV!
Jennifer Messier and Brooke Neal are on their way to Dallas, TX, and excited to connect with attendees, partners, and community members in person.
If you’re at the Expo this weekend, be sure to stop by and say hello,we’d love to meet you!

Research is important because it reveals the stories behind the numbers, the people behind the data, and the truth behind assumptions. Better knowledge → better decisions → better outcomes.

Going live today on Instagram! Hope to see you there!

It's World Kindness Day!

#worldkindnessday

We are at The 13th Annual Epilepsy Awareness & Education Expo in Anaheim, CA!!!!!!!!!!!!!!!!!!!!

#epilepsy

This is an SOS! Who can see this post?

YouTube video by HS Connect Why Your Story Matters in Rare Disease Research

We had the pleasure of sitting in with HS connect! Give it a look!!!
www.youtube.com/watch?v=h1Pw...

We are in Amsterdam at the World Orphan Drug Congress!

We’re starting to think we need a map of the U.S. with a star everywhere Jen pops up!

If you’re heading to The Little Legs Big Heart Foundation's Skeletal Dysplasia Conference in West Palm, make sure to find her and say hey!

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?