Rare Patient Voice

Rare Patient Voice Wes Michael, President and Founder
We connect patients and caregivers with research opportunities.
(300)

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.

Living with Her2 Positive? The interview takes place first, and if selected, you will be eligible for upcoming events, w...
02/11/2026

Living with Her2 Positive?

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.

👉 Sign up today to share your experience and make a difference: 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.

Rare isn’t always visible, but it’s always powerful. 🧡For some, Rare Disease Month is about advocacy and awareness. For ...
02/11/2026

Rare isn’t always visible, but it’s always powerful. 🧡

For some, Rare Disease Month is about advocacy and awareness. For others, it’s about connection and finding the people who finally “get it.” At Rare Patient Voice, we want to know: What does this month mean to you?

Whether you’re sharing your story for the first time or the hundredth, your voice is the key to better research and better lives.

Drop a comment below and share your "why" with us. 👇

Help Shape the Future of Breast Cancer Patients!Your experience as a Breast Cancer patient is invaluable. Join a 30-35 m...
02/11/2026

Help Shape the Future of Breast Cancer Patients!

Your experience as a Breast Cancer patient is invaluable. Join a 30-35 minute online survey to share your experience.

đź’° Compensation: $60 for your time.
đź”— Sign up here: https://www.rarepatientvoice.com/rp/GOLD

Already a member? Don’t fill out the form again! Just DM us your email and mention this study and we’ll check your profile.

Let’s work together to make a difference!

02/11/2026

Lance shares his story with Hereditary Hemorrhagic Telangiectasia for Rare DIsease Month!

"Hereditary Hemorrhagic Telangiectasia is a blood vessel disorder affecting 1 in 5000 people. Known as “more than just a nosebleed,” HHT is progressive and can impact the lungs, brain, liver, or heart, and can lead to needing surgery or transplant." - Lance Fight HHT with Me

Join an exclusive 120-minute online bulletin board to share your insights:You must be 18+ and currently using Nemluvio t...
02/11/2026

Join an exclusive 120-minute online bulletin board to share your insights:

You must be 18+ and currently using Nemluvio to treat Atopic Dermatitis or Prurigo Nodularis or a caregiver to a loved one ages 12-18 using Enbrel to treat Pediatric Psoriasis, Juvenile Psoriatic arthritis or Juvenile Idiopathic Arthritis.

If you're interested in sharing your insights
Join Here: 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!

02/10/2026

The Size of the Fix Doesn’t Diminish the Reality of Your Pain

I know what you’re thinking: If the solution is that simple, does that mean my pain isn’t as bad as I think it is?

No.

~ Stephanie ~



Have you or a loved one been diagnosed with Chronic Lymphocytic Leukemia? We need your help! Participate in a 45 minute ...
02/10/2026

Have you or a loved one been diagnosed with Chronic Lymphocytic Leukemia? We need your help! Participate in a 45 minute web-assisted interview and earn $90 for your insights.

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!"

Behind every medical advancement is a story of determination. 🧡As we celebrate and look forward to , we’re highlighti...
02/10/2026

Behind every medical advancement is a story of determination. 🧡

As we celebrate and look forward to , we’re highlighting 8 African American icons who changed the landscape of healthcare. Whether it was improving blood storage, advancing chemotherapy, or inventing life-changing mobility aids, their contributions continue to support the rare community every single day.

Check out the blog here: https://rarepatientvoice.com/black-history-month-meets-rare-disease-day/

Have you been diagnosed with Pulmonary Arterial Hypertension? We are seeing PAH patients who are taking Oral Treprostini...
02/10/2026

Have you been diagnosed with Pulmonary Arterial Hypertension?

We are seeing PAH patients who are taking Oral Treprostinil to participate in a 45 minute online survey!

Sign up here: 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!

Rare doesn't have to mean alone. 🤝 Whether you’re a patient, a caregiver, or an advocate, we all carry a unique strength...
02/10/2026

Rare doesn't have to mean alone. 🤝

Whether you’re a patient, a caregiver, or an advocate, we all carry a unique strength that others might not see. Today, we want to turn that strength into a ripple effect.

What is one word of encouragement you’d offer to someone else in the rare community today? Drop it in the comments! 👇

Have you or a loved one been diagnosed with Her2 Metastatic Non-Small Cell Lung Cancer (NSCLC) We want to hear from you...
02/10/2026

Have you or a loved one been diagnosed with Her2 Metastatic Non-Small Cell Lung Cancer (NSCLC) We want to hear from you! Sign up to see if you qualify for a year long advisory board!

👉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!

For Rare Disease Month Jennifer shared with us her journey with Myasthenia Gravis!"In 2021, I was diagnosed with Myasthe...
02/09/2026

For Rare Disease Month Jennifer shared with us her journey with Myasthenia Gravis!

"In 2021, I was diagnosed with Myasthenia Gravis, a rare neuromuscular autoimmune disease. My health had declined for a couple years before I got my official diagnosis. My ocular symptoms started around age 8, but we’re brushed off that I just had a lazy eye and bad prescription glasses. In my early 20s it started to generalize when I was going through some personal trauma. I had episodes of weakness in my arms and legs that would cause me to fall or drop things. I had such bad difficulty swallowing that I had lost 100 pounds and was on a purée and liquid diet for two years. Having a fluctuating and rapid onset of muscle weakness has taken a lot of adjusting and adapting my life. I do not let MG control my life, even when my body slows me down. I went from not thinking I was gonna make it to my 30th birthday, to now being a Mom about to turn 35! I am now trying to raise awareness for the MG community. I want to show there is more to me than a rare diagnosis. Follow my journey at Myasthenia Warrior." -Jennifer

If you would like to have the potential opportunity to have your health journey shared this month fill out this form: https://forms.gle/i6PxbZtDP6KnVXdK7

Address

711 Hampton Lane
Towson, MD

Opening Hours

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

Telephone

+14439861949

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Voice your opinion, improve medical products and services, and earn cash rewards

For patients and caregivers: we provide the opportunity to share opinions in surveys and interviews and earn cash rewards For patient advocacy groups: we partner to raise money for advocacy groups For market research firms: we help find hard-to-recruit patients and their caregivers in the US and Canada