Rare Patient Voice

24/04/2026

Your IBD experience is worth $180. We are looking for people living with Ulcerative Colitis or Crohn’s to join a 45-minute online interview. Your story helps researchers understand what living with IBD is really like.

Help shape the future of IBD.

Be heard. Be represented. Start your journey here and sign up today: https://www.rarepatientvoice.com/rp/GOLD

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

24/04/2026

Living with Tenosynovial Giant Cell Tumor isn't always easy, but your experience can help others. Join a conversation that counts.

We're looking for TGCT patients to share their stories through a 30-minute web-assisted phone interview. Earn $60 for your initial 30-minute interview. Long-term Impact: Potential for a year-long engagement if chosen.

Make a Difference: Help shape the future of TGCT research and care.

🔗 Sign up here: https://www.rarepatientvoice.com/rp/GOLD

23/04/2026

Ways to talk to your community!

23/04/2026

Get paid for your expertise! 💡
As a rare disease patient or caregiver, you are an expert by experience. It’s time the medical world treats you like one.
Ready to be heard? 👉 https://www.rarepatientvoice.com/rp/PinPost
- Join a community of 150k+ advocates.
- Shape the future of rare disease treatments.
- Get rewarded for your time and insights.

23/04/2026

🔍 Study Opportunity: Pancreatic Cancer Caregivers 🔍

Participate in a 60-minute Web Assisted Phone Interview and contribute to research. Compensation: $100.

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! 🌟

22/04/2026

April 22–29 is Primary Immunodeficiency (PI) Awareness Week. 🧬

Living with PI often means navigating a world that doesn’t quite understand the "invisible" battle of a compromised immune system. This week is all about shining a light on the various types of rare and chronic disorders that affect the body's ability to protect itself.

To the patients, caregivers, and advocates in the PI community: we see your resilience, your strength, and your expertise. Your experiences are the key to a better understanding of these conditions.

22/04/2026

Ready for Seattle? ✈️

We are heading to the Pacific Northwest for CancerCon 2026 by Stupid Cancer! If you’re attending, we’d love to connect and hear your story.

Make sure to stop by and say hello to Jennifer Messier, who will be representing the Rare Patient Voice team. Whether you're a patient or a caregiver, your voice is vital in helping researchers understand the real-life impact of cancer.

📍 Event Details:
Dates: April 30 – May 3, 2026
Time: Starting at 08:00 AM
Location: Hyatt Regency, Seattle, Washington

Let’s make an impact together. See you in Seattle! 🏔️🧡

22/04/2026

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!

21/04/2026

Expertise isn't just found in a medical degree, it’s found in the person living the journey every single day. 🗣️

We want to know: If you could sit down with a researcher today, what truth about your condition would you want them to take back to their team?

21/04/2026

Are you 18-22 and living with Congenital Hearing Loss?

Are you caring for a loved one under the age of 22 with Congenital Hearing Loss? We want to hear from you!

The interview occurs first, and then 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 could 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 for you.

20/04/2026

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!

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 ...