Rare Patient Voice

10/05/2025

Study Opportunity: Vision Impairment: X-Linked Retinoschisis (XLRS)

Are you a patient who has been diagnosed with X-Linked Retinoschisis (XLRS) or are you a caregiver of child between the ages 1-17 years old who have been diagnosed with X-Linked Retinoschisis (XLRS) If so, you may be eligible to participate in a 75 minute Zoom interview. Must have a desktop or laptop and must have a working camera.

If you are interested in sharing your insights, click below to join: https://www.rarepatientvoice.com/rp/XLRS11924

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!

10/04/2025

🔍 Study Opportunity: Menopause 🔍

The interview occurs first and then if selected they 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/Menopause11126

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! 🌟

10/03/2025

We Have a New Survey Opportunity for Prostate Cancer Patients!

📅 Quick and Easy: Just a 10-minute survey.
💸 Get Paid: Receive $25 for your participation.
🔗 Sign Up Now: https://www.rarepatientvoice.com/rp/PC11942

Let's work together to make a difference!

10/03/2025

Have you been diagnosed with Lymphoma and or are you caring for a loved one who has been diagnosed with Lymphoma? Have you used or currently using Ommaya Reservoir Implant?

If so, you may be eligible to participate in a 60 minute web-assisted phone interview.

If you're interested in sharing your insights, click below to join:
https://www.rarepatientvoice.com/rp/L11904

10/02/2025

Calling All Caregivers and Patients: Participate in Focus Opportunities!

The interview occurs first with both the patient and caregiver. If selected they will be eligible for upcoming events which would include options such as video shoots, photo shoots and speaking engagements!

If you're interested in sharing your insights, click below to join:
https://www.rarepatientvoice.com/rp/AD11951

Already a member? DM us your email along with the study you're interested in, and we'll check your profile for you.

10/02/2025

🧪🧙🏼Sometimes living with chronic illness feels like mixing up potions to get through the day!🧪🧙🏼

A dash of courage here, a spoonful of rest there, maybe a drop of patience when the symptoms hit hardest.

If you could create your own potion to help you through the day, what would you mix up?

10/02/2025

🔍 Study Opportunity: Prostate Cancer 🔍

The interview occurs first and then if selected they 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/ProstateCancer11306

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! 🌟

10/02/2025

Jennifer is headed to Ft. Worth right now for the American Association of Kidney Patients Patient Meeting!

If you're attending this event be sure to stop at our table and say hello!

10/01/2025

🎃October Awareness Is Here! 🎃

A new season brings new opportunities to raise awareness! Share this post and help use raise awareness all month long!

⬇️ Know a cause we haven’t highlighted? Share it in the comments! ⬇️

09/30/2025

✉️Our monthly newsletter is out now!✉️

Check out:
- Partner's Corner: Breakthrough T1D North Texas Oklahoma
- Study Results on "What might encourage you to participate in a clinical trials?"
- All our current open study opportunities
- And more!

Check your inbox or visit our website here: https://rarepatientvoice.com/newsletter76/

09/29/2025

🔍 Study Opportunity: Non-Hodgkin's Lymphoma: Follicular Lymphoma 🔍
Participate in a 60-minute Web Assisted Phone Interview and contribute to research. Compensation: $120.

If you're interested in sharing your insights, click below to join:
https://www.rarepatientvoice.com/rp/Follicular11747

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 ...

09/27/2025

🔍 Study Opportunity: Spinal Muscular Atrophy (SMA) 🔍
Participate in a 60 minute web-assisted phone interview along with 30 minutes of APP testing.

If you're interested in sharing your insights, click below to join:
https://www.rarepatientvoice.com/rp/SMA11739
Already a member? DM us your email along with the study you're interested in, and we'll check your profile for you.