Rare Patient Voice

06/05/2026

🚨 Having trouble signing up? Don't worry, we're here to help! 💙

Sometimes our system may block sign-ups if your selected country doesn't match your current location or if you're using a VPN. Double-check your location settings, turn off any VPNs, and try again.

Need assistance? Contact our Panel Management Team at [email protected].

06/05/2026

Do you live with Fabry Disease?

We are looking for people living with Fabry Disease to participate in an online study!

Your story helps researchers understand what living with Fabry is really like. Help shape the future of Fabry. 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 "Fabry" and we’ll check your eligibility right away!

06/05/2026

We’re looking for the faces (and voices) of the Metastatic Colorectal Cancer community.

Living with Metastatic Colorectal Cancer 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/platinum

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

06/04/2026

🚨 New Paid Research Studies Available! 🚨
Rare Patient Voice is currently recruiting for multiple research opportunities for patients and caregivers. These studies help amplify patient experiences and contribute to improving healthcare and treatments. 💙

✨ View all open studies here: https://rarepatientvoice.com/patients/study-opportunities/
📝 Sign up here: https://www.rarepatientvoice.com/rp/PinPost

✔️ Worldwide opportunities
✔️ Many studies are remote/online
✔️ Compensation available for participation

Find studies by condition, location, and eligibility on our website today!

06/04/2026

Defining Strength, Not the Diagnosis.

Living with Postmenopausal Osteoporosis (PMO) doesn't mean slowing down. We want to celebrate the active lives of women in our community by featuring real stories in upcoming projects, including video shoots, professional photography, and speaking opportunities.

Your journey can inspire others to keep moving. Start your journey here: https://www.rarepatientvoice.com/rp/GOLD

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

06/04/2026

Some days ask more of you than others. 💜

If you're living with a chronic illness, please remember: your strength isn't measured by how much you accomplish in a day, it's measured by your perseverance, resilience, and courage to keep moving forward.

"You are stronger than the days that tried to break you."

To every patient, caregiver, and advocate in our community: we see you, we celebrate you, and we're grateful for the strength you bring to the world every day.

06/03/2026

📍 See you at the Alexander Graham Bell Association for the Deaf and Hard of Hearing Listening & Spoken Language Symposium!

The Rare Patient Voice team is excited to connect with attendees, advocates, professionals, and families dedicated to listening and spoken language. Visit our booth to discover how patients and caregivers can contribute to important healthcare research and make a meaningful impact.

06/03/2026

We’re looking for the faces (and voices) of the Lupus Nephritis OR Primary Membranous Nephropathy community. Living with Lupus Nephritis (LN) OR Primary Membranous Nephropathy takes strength.

We have a Clinical Trial opportunity and need your help!

📍 Start your journey here: https://www.rarepatientvoice.com/rp/GOLD Member already?

Send us a DM with your email and we’ll check your eligibility right away!

06/02/2026

Are you a young adult with Cancer?

Join an online dashboard and earn compensation for your time!

Be heard. Be represented. If you're interested in sharing your insights, join today!

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 Patient Voice helps patients and caregivers voice their opinions through surveys and interviews to improve medical products and services.

06/01/2026

Welcome to June! ☀️ This month brings a powerful opportunity to amplify patient voices and raise vital awareness for many rare and chronic conditions. 💙

We want to make sure our community is fully and accurately represented. Take a flip through our June awareness slides! 📖

👉 Is your condition or awareness day missing from our list? Let us know in the comments below! Drop the name and date, and we will gladly add it to our updates. Your voice deserves to be seen and heard. ✨