Rare Patient Voice

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Rare Patient Voice Wes Michael, President and Founder
We connect patients and caregivers with research opportunities.
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Rare Patient Voice helps patients and caregivers in the US, Australia, Canada, France, Germany, Italy, New Zealand, Spain, and the UK voice their opinions through paid, confidential surveys and interviews to improve medical products and services.

A sense of community makes us all stronger! Together, we create a supportive environment where every unique voice is val...
10/20/2026

A sense of community makes us all stronger! Together, we create a supportive environment where every unique voice is valued.

Join us in celebrating the power of connection and inclusion.

Have you or someone you care for been diagnosed with Congenital Thrombotic Thrombocytopenic Purpura (cTTP)? Your voice a...
10/20/2026

Have you or someone you care for been diagnosed with Congenital Thrombotic Thrombocytopenic Purpura (cTTP)? Your voice and experience can make a real difference in medical research. 🩸💡

Rare Patient Voice is looking for patients and caregivers in the US to participate in paid telephone interviews. Share your journey and help improve understanding of cTTP!

Details:

📱 Format: Telephone interview

💵 Compensation: Get paid for your time and insights

🤝 Impact: Help advance research for the rare disease community

Learn more and see if you qualify by signing up here:

👉 https://www.rarepatientvoice.com/rp/cTTP13618 👈

Are you or someone you care for living with Friedreich’s Ataxia (FA)? Researchers are looking for patients and caregiv...
10/19/2026

Are you or someone you care for living with Friedreich’s Ataxia (FA)?

Researchers are looking for patients and caregivers in the US to participate in an online survey and share their valuable insights. Your voice can help advance research and support the FA community.

Already a member with us? Send us a message and we’ll check your profile to see if you match this opportunity!

New to Rare Patient Voice? Click the link to sign up today!
https://www.rarepatientvoice.com/rp/FA12974

Have you or a loved one been diagnosed with Primary Biliary Cholangitis? Your story matters, and it could help shape fut...
10/19/2026

Have you or a loved one been diagnosed with Primary Biliary Cholangitis? Your story matters, and it could help shape future healthcare research. 💡

Rare Patient Voice is currently looking for participants for paid video interviews to share their lived experiences with Primary Biliary Cholangitis.

To learn more and sign up today:

👉 https://www.rarepatientvoice.com/rp/LD13262 👈

Have you or your loved one been diagnosed with Schizophrenia? We are seeking U.S. caregivers and patients ages 13-17 wil...
10/18/2026

Have you or your loved one been diagnosed with Schizophrenia?

We are seeking U.S. caregivers and patients ages 13-17 willing to share their journey with Schizophrenia.

In addition, some participants may be considered for the future:
📸 Professional Photo Shoots
🎥 Video Shoots
🎤 Speaking Engagements

Your experiences can help researchers better understand the real-life impact of Schizophrenia and contribute to future awareness efforts. By sharing your experience, you can help researchers better understand the real-world impact of Schizophrenia and contribute to future research and awareness efforts.

Start your journey here and sign up today: https://www.rarepatientvoice.com/rp/S13573

Already a member? Send us a DM with your email address and "Schizophrenia" and we'll check your eligibility right away.

Living with Paroxysmal Nocturnal Hemoglobinuria (PNH) or caring for someone with the condition? Your voice and experienc...
10/17/2026

Living with Paroxysmal Nocturnal Hemoglobinuria (PNH) or caring for someone with the condition? Your voice and experience matter.

Rare Patient Voice is looking for patients and caregivers to share their insights through a web-assisted interview (with potential follow-up sessions) to help advance medical research and future treatments. Participants are compensated for their time and expertise.

Sign up here: https://www.rarepatientvoice.com/rp/PNH12916

We’re looking to connect with adults living with Chronic Myeloid Leukemia (CML). Your experience could help bring visibi...
10/16/2026

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.

Make an Impact on Healthcare Research | Open Patient & Caregiver Studies 🗣️✨Your lived experience with a medical conditi...
10/15/2026

Make an Impact on Healthcare Research | Open Patient & Caregiver Studies 🗣️✨

Your lived experience with a medical condition can help shape the future of treatments and therapies. Rare Patient Voice has hundreds of open research studies, surveys, and clinical trial opportunities available for patients and family caregivers across a wide range of rare diseases and chronic conditions.

Why Participate?
💡 Influence Healthcare: Help researchers understand what living with your condition is really like.

🤝 Flexible Formats: Share your insights through quick online surveys, virtual focus groups, or phone interviews.

💵 Get Compensated: Your time and expertise are valuable, earn compensation for participating in studies.

How to Get Started:
1. Visit our study opportunities page to view current open listings.
2. Sign up and list your medical conditions to get matched with studies that fit your unique journey.
3. Share your story and start contributing to medical advancements!

🔗 Find open studies and sign up today: https://rarepatientvoice.com/patients/study-opportunities/

Are you or a loved one living with Chronic Graft-Versus-Host Disease (cGVHD)?We are seeking individuals who are currentl...
10/15/2026

Are you or a loved one living with Chronic Graft-Versus-Host Disease (cGVHD)?

We are seeking individuals who are currently taking or have previously taken REZUROCK or NIKTIMVO to share their experience in an online research interview. Your insights can help shape future support and resources for the cGVHD community.

💬 Up to $175 is provided for completed interviews and homework.

👉 Click the link to sign up today: https://www.rarepatientvoice.com/rp/GVHD10146W4

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711 Hampton Lane
Towson, MD

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Monday 9am - 5pm
Tuesday 9am - 5pm
Wednesday 9am - 5pm
Thursday 9am - 5pm
Friday 9am - 5pm

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+14439861949

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