Rare Patient Voice
@rarepatientvoice.bsky.social
Empowers patients and family caregivers to share their voices with researchers and companies developing products, devices, and treatments to improve lives.
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.
November 20, 2025 at 4:16 PM
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!
November 14, 2025 at 3:36 PM
Going live today on Instagram! Hope to see you there!
November 13, 2025 at 5:17 PM
This is an SOS! Who can see this post?
November 6, 2025 at 5:30 PM
This is an SOS! Who can see this post?
We had the pleasure of sitting in with HS connect! Give it a look!!!
www.youtube.com/watch?v=h1Pw...
www.youtube.com/watch?v=h1Pw...
Why Your Story Matters in Rare Disease Research
YouTube video by HS Connect
www.youtube.com
October 29, 2025 at 3:34 PM
We had the pleasure of sitting in with HS connect! Give it a look!!!
www.youtube.com/watch?v=h1Pw...
www.youtube.com/watch?v=h1Pw...
We are in Amsterdam at the World Orphan Drug Congress!
October 28, 2025 at 9:22 PM
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!
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!
October 23, 2025 at 4:06 PM
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!
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!
October 17, 2025 at 6:26 PM
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!
October 16, 2025 at 4:26 PM
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!
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!
October 6, 2025 at 8:15 PM
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!
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!
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!
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!
October 3, 2025 at 4:30 PM
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!
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?
October 1, 2025 at 3:24 PM
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.
September 17, 2025 at 8:52 PM
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?
September 16, 2025 at 4:19 PM
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?
What’s been your biggest challenge?
September 15, 2025 at 9:28 PM
Caregivers, your stories matter too and you have a seat at our table!
What’s been your biggest challenge?
What’s been your biggest challenge?
Unpopular opinion: Patients and caregivers are the REAL experts in healthcare. Change my mind.
September 11, 2025 at 4:21 PM
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.
September 10, 2025 at 4:43 PM
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?
September 8, 2025 at 8:05 PM
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.
September 4, 2025 at 5:49 PM
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?
September 3, 2025 at 4:03 PM
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!
September 2, 2025 at 5:52 PM
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!
August 29, 2025 at 5:15 PM
Reminder we will be closed on Monday due to the holiday. Hoping you all have a nice weekend!
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
rarepatientvoice.com
Rare Patient Voice
Rare Patient Voice helps patients and caregivers voice their opinions through surveys and interviews to improve medical products and services.
rarepatientvoice.com
August 28, 2025 at 4:46 PM
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
rarepatientvoice.com