Rare Patient Voice

11/08/2025

Study Opportunity: Endometrial Cancer, Renal Cell Carcinoma, Liver Cancer, Thyroid Cancer patients

We’re looking for individuals who were otherwise healthy before experiencing a heart attack or stroke. If you’re a woman under 65 or a man under 55 who faced an unexpected heart event, we want to hear from you.

The interview takes place first, and if selected, you will be eligible for upcoming events, which may include opportunities such as video shoots, photo shoots, and speaking engagements that could involve travel.

If you're interested in sharing your insights, click below to join:
https://www.rarepatientvoice.com/rp/platinum

Already a member? DM us your email along with the study you're interested in, and we'll check your profile for you.

11/08/2025

Study Opportunity: Vexas Syndrome You’ve been through the uncertainty.

You deserve to be heard. Join our VEXAS panel today and help guide future studies.

If you're interested in sharing your insights, click below to join: https://www.rarepatientvoice.com/rp/GOLD

Already a member? DM us your email along with the study you're interested in, and we'll check your profile for you. Let's work together to make a difference!

11/07/2025

If you're at the HOPE Charities Conference stop by our booth and say hello to Brooke and Haley!

11/07/2025

Have you been diagnosed with Multiple Myeloma? We want to hear from you!
This is a 60 minute web-assisted phone interview and you will be compensated $120 if you qualify and complete the study.

👉 Sign up today to share your experience and make an impact: https://www.rarepatientvoice.com/rp/Platinum

Already a member? DM us your email along with the study you're interested in, and we'll check your profile for you.
Let's work together to make a difference!

11/07/2025

🔍 Study Opportunity: Chronic Obstructive Pulmonary Disease (COPD) 🔍
Participate in a 40-minute online survey and contribute to research. Compensation: $80.

If you're interested in sharing your insights, click below to join:
https://www.rarepatientvoice.com/rp/GOLD

Already a member? DM us your email along with the study you're interested in, and we'll check your profile for you.
Let's work together to make a difference! 🌟

11/06/2025

Study Opportunity for RA Patients

We’re inviting individuals with rheumatoid arthritis who have previously been on a TNF blocker to participate in a quick interview!

The interview occurs first, and then if selected, you will be eligible for upcoming events, which would include options such as video shoots, photo shoots, and speaking engagements that could involve travel.
If you're interested in sharing your insights, click below to join

https://www.rarepatientvoice.com/rp/Platinum

Already a member? DM us your email along with the study you're interested in, and we'll check your profile for you.
Let's work together to make a difference!

11/06/2025

🔍 Interview Opportunity: Schizophrenia Patients & Family Caregivers 🔍

Participate in a 60-minute Web Assisted Phone Interview and contribute to research. Compensation: $120.

If you're interested in sharing your insights, click below to join:

https://www.rarepatientvoice.com/rp/GOLD

Already a member? DM us your email along with the study you're interested in, and we'll check your profile for you.

Let's work together to make a difference! 🌟

11/05/2025

Calling all parents of adolescents who are embarking on a weight-loss journey with injectable medication.

Qualified participants will be invited to participate in a 1-hour individual interview session. In appreciation of their time, participants will be compensated $250 for their time at the conclusion of their session.

Qualified participants will include adolescents (children) aged 10-17 years old (must be accompanied by a parent/legal guardian).

This is not a clinical study. Participants will be asked to interact with a new needle-based injection device by completing simulated tasks and providing feedback on their experience. Feedback from real end users on this system is very important to help with the development of this product.

If you're interested in sharing your insights, click below to join: https://www.rarepatientvoice.com/rp/GOLD

Already a member?
DM us your email along with the study you're interested in, and we'll check your profile for you. Let's work together to make a difference!

11/05/2025

Let’s spread some awareness! Comment an orange emoji below!🧡

11/04/2025

Watch this episode from All Home Care Matters featuring our Senior VP Pam Cusick!

All Home Care Matters and our host, Lance A. Slatton were honored to welcome Pam Cusick as guest to the show.About Pam Cusick, Senior Vice President at Rare ...

11/04/2025

Have you been diagnosed with Familial Chylomicronemia Syndrome (FCS)?

Share your experiences and help shape the future of care!
Join an online research study and receive compensation for your time.

👉 Sign up at https://www.rarepatientvoice.com/rp/GOLD

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 ...

11/03/2025

🍂November Awareness Is Here! 🍂
A new season brings new opportunities to raise awareness! Share this post and help use raise awareness all month long!

⬇️ Know a cause we haven’t highlighted? Share it in the comments! ⬇️