Rare Patient Voice

03/10/2026

Why do our patients love what they do? From the 'therapeutic experience' of being heard to the confidence that their data is making a difference, the feedback speaks for itself.

Join today and let us know: What’s your story? 🦓

03/10/2026

Do you have eczema, or do you care for a child age 2 or younger with eczema?

We’d like to hear from you. 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!

03/09/2026

Unpredictable low blood sugar can be serious, especially when it’s caused by rare tumors like insulinomas or non-islet cell tumors. Adults 18+ may be eligible for a U.S. research program evaluating an investigational treatment option.

If you’re interested in being part of upcoming projects, click below to join: https://www.rarepatientvoice.com/rp/platinum

Already a member? DM us your email + the study name, and we’ll 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 ...

03/09/2026

Living with Growth Hormone Deficiency or caring for someone who is?

We are looking for caregivers (could care for an adult or child), adult patients and adolescent patients (10-17 yrs old) to participate in an in-person interview in the following areas:

Chicago, IL (Fieldwork is March 2nd-14th)
Columbus, OH (Fieldwork is March 2nd-7th)
NYC, NY (Fieldwork is March 9th-12th)
Orlando, FL (Fieldwork is March 2nd-7th)
Tampa, FL (Fieldwork is March 9th-14th)

Compensation is included $360 for adults, caregivers and $385 for adolescents (This does not include travel incentive.

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!

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 ...

03/08/2026

Have you been diagnosed with Non-Segmental Vitiligo?

We want to hear from you!

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 include 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.

03/07/2026

Healing isn't a race, but the world often treats it like a sprint. It’s okay to take the time your body actually needs, regardless of the 'get well soon' deadlines others might set for you.

03/06/2026

We are seeking patients diagnosed with Pulmonary Arterial Hypertension (PAH), Pulmonary Fibrosis (PF), or Interstitial Lung Disease (ILD), or their loved ones, to participate in a 30-minute interview. Compensation is provided for your time.

Sign up today 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!

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 ...

03/06/2026

Inviting parents or guardians of adolescents ages 10–17 to learn more about an upcoming research session. This will include a 60 minute in-person session and you will be compensated $180 for your time!

Do you have experience with Plaque Psoriasis, Eczema (Atopic Dermatitis), Idiopathic Arthritis (or juvenile rheumatoid/idiopathic arthritis), Ankylosing Spondylitis (AS), Psoriatic Arthritis (PsA), Chronic Migraine, Episodic Cluster Headache, Asthma, Perennial Allergic Rhinitis, Ulcerative Colitis (UC), Crohn's Disease (CD), T1/T2 Diabetes, Obesity Weight Management, or Eosinophilic Esophagitis (EOE)? We want to hear from you!

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

03/06/2026

Have you discussed postpartum depression medication options with your doctor?

We want to hear from you! If eligible you will participate in a 15 minute online survey and you will be compensated $30 for your valued time and insights.

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.

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 ...

03/06/2026

¿Has sido diagnosticada con sofocos a causa de la menopausia?

Este es una llamado para todas las mujeres que quieran compartir sus experiencias a través de nuestra red.

Primero se realizará una entrevista y, si es seleccionada, tendrá la posibilidad de formar parte de eventos como: grabaciones de video, sesiones de fotos y participar como oradora, lo cual podría implicar viajar.

👉 Regístrese hoy para compartir su experiencia y generar un impacto: https://www.rarepatientvoice.com/rp/Platinum

¿Ya es miembro? Envíenos un mensaje directo con su correo electrónico junto con el estudio que le interesa, y revisaremos su perfil.

03/05/2026

Living with Chronic Myeloid Leukemia (CML)? We want to hear your story.

The interview occurs first. If selected, you will be eligible for upcoming opportunities, which would include options such as in-home video shoots, photo shoots, and speaking engagements that may involve travel.

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.

Let's work together to make a difference!

03/05/2026

To anyone who feels 'shackled' today: You are incredibly brave for continuing to move forward despite the weight. 🦓💪