Rare Patient Voice

06/18/2026

🚨 New Paid Research Studies Available! 🚨
Rare Patient Voice is currently recruiting for multiple research opportunities for patients and caregivers. These studies help amplify patient experiences and contribute to improving healthcare and treatments. 💙

✨ View all open studies here: https://rarepatientvoice.com/patients/study-opportunities/

📝 Sign up here: https://www.rarepatientvoice.com/rp/PinPost

✔️ Worldwide opportunities
✔️ Many studies are remote/online
✔️ Compensation available for participation

Find studies by condition, location, and eligibility on our website today!

06/18/2026

Join us a for a cozy chat!

06/18/2026

We’re looking for the faces (and voices) of the Ulcerative Colitis (UC) community.

Living with UC takes strength. We want to celebrate that strength by featuring real patients in upcoming projects. From video shoots, photo shoots, and speaking engagements.

📍 Start your journey here: https://www.rarepatientvoice.com/rp/GOLD

Member already? Send us a DM with your email and "UC" and we’ll check your eligibility right away!

06/17/2026

Have you been diagnosed with Schizophrenia?

We want to hear from you! If eligible you will participate in a year long study with focus groups and you will be compensated for your valued time and insights.

If you're interested in sharing your insights, join today! Sign up here: https://www.rarepatientvoice.com/rp/SCH12975

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.

06/17/2026

We’re looking to connect with adults living with high cholesterol. The interview takes place first, and if selected, you may be considered for future advocacy opportunities, which could include activities such as photo shoots, video shoots, speaking engagements, sharing your experiences, and other awareness initiatives.

If you're interested in sharing your insights and helping advance research, click below to see if you qualify: https://www.rarepatientvoice.com/rp/HighCholesterol12643

Already a member? Send us a DM with the email address associated with your Rare Patient Voice account and mention this high cholesterol study. We'll be happy to check your profile for you.

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 ...

06/17/2026

💜 Every rare disease journey tells a story of courage, resilience, and hope.

Living with a rare condition can sometimes feel isolating, but your experiences matter, your voice matters, and your impact reaches farther than you may realize. Together, the rare disease community continues to raise awareness, inspire change, and support one another through every challenge and victory.

Today, we're celebrating the strength found in every patient, caregiver, and advocate who shows up each day with determination and heart. 💜

✨ Your journey may be rare, but your strength, resilience, and impact are felt in every heart you touch.

Tag someone in the rare disease community who inspires you. ⬇️

06/17/2026

We’re looking to connect with adults living with COPD.

Your experience could help bring visibility to the realities of living with COPD and support future awareness efforts.

The interview takes place first, and if selected, you may be considered for future advocacy opportunities, which could include activities such as photo shoots, video shoots, speaking engagements, sharing your experiences, and other awareness initiatives.

If you're interested in sharing your insights and helping raise awareness, click below to sign up! https://www.rarepatientvoice.com/rp/COPD11099

Already a member? Send us a DM with the email address associated with your Rare Patient Voice account and mention the COPD study. We'll be happy to check your profile for you.

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 ...

06/17/2026

We’re looking for the faces (and voices) of the Giant Cell Arteritis (GCA) community.

Living with Giant Cell Arteritis (GCA) takes strength. We want to celebrate that strength by featuring real patients in upcoming projects. From video shoots, photo shoots, and speaking engagements.

📍 Start your journey here: https://www.rarepatientvoice.com/rp/GOLD

Member already?
Send us a DM with your email and "Giant Cell Arteritis (GCA)" and we’ll check your eligibility right away!

06/16/2026

We’re looking to connect with adults living with Chronic Myeloid Leukemia (CML).

Your experience could help bring visibility to people living with CML and contribute to greater awareness of the patient journey.

The interview takes place first, and if selected, you may be considered for future advocacy opportunities, which could include activities such as photo shoots, video shoots, speaking engagements, sharing your experiences, and other awareness initiatives.

If you're interested in sharing your insights and helping raise awareness, click below to sign up! https://www.rarepatientvoice.com/rp/PhCML11987

Already a member? Send us a DM with the email address associated with your Rare Patient Voice account and mention the CML study. We'll be happy to check your profile for you.

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 ...

06/16/2026

We’re looking to connect with adults who have experienced a heart attack or cardiac event related to elevated Lp(a).

Participants will first be invited to complete an interview. If selected, you may also be considered for future advocacy opportunities, which could include photo shoots, video projects, speaking engagements, sharing your story, and other awareness initiatives.

By sharing your experience, you could help raise awareness and give a voice to others affected by elevated Lp(a)-related cardiovascular disease.

Interested in learning more? Click below to see if you qualify. https://www.rarepatientvoice.com/rp/HeartAttack11023

Already a Rare Patient Voice member? Send us a DM with the email address associated with your account and mention the Heart Attack / Elevated Lp(a) study. We'll be happy to check your profile for you.

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 ...