Rare Patient Voice

02/03/2026

For those that live with a rare disease, what is one sentence you wish others understood about your life?

⬇️Comment below!⬇️

02/02/2026

For Christina, living with AGID means navigating a body that plays by its own rules. It isn’t always easy to explain the fatigue, the pain, or the uncertainty that comes with a rare autoimmune condition, but your story deserves to be told.

"Fifteen years ago, after years of stomach issues, I was diagnosed with Gastroparesis. For many years it was manageable. Fast forward about ten years and it started becoming much more severe. After trying and failing many treatments, my doctors decided it was time for a GJ tube. I also started experiencing dysmotility throughout my GI tract. I became desperate for answers as to why my GI issues were worsening. After reading a few articles, I messaged one of the authors of these many articles and told him my story. He responded and said even though he’s now no longer seeing patients and primarily does research for the NIH, he would be willing to see me as a patient. I messaged my current GI who agreed and sent over the required insurance referral. Thanks to a collaborative effort from the doctor at the NIH and my current GI specialist, I was able to be properly diagnosed with Autoimmune Gastrointestinal Dysmotility (AGID). AGID currently affects anywhere from 0.01% to 0.1% of patients with unexplained GI Dysmotility. Because I have AGID, I was prescribed weekly IVIG. Because of IVIG I am no longer tube fed and can actually eat a completely normal diet! I was thankfully able to have my tube removed this time last year and IVIG continues to significantly help me. "

We’re sharing Christina’s journey today because Rare Disease Month starts with empathy. It starts with listening to the voices of those who live these experiences every single day.

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

02/01/2026

Rare is many. Rare is strong. Rare is proud. 💙

It’s officially Rare Disease Month! While our individual conditions might be rare, our collective voice is a roar.

We’re spending the whole month of February:
- Sharing your stories.
- Highlighting rare warriors.
- Bridging the gap between patients and researchers.

Comment below: What rare condition are you representing this month? 👇

01/31/2026

Today we celebrate International Zebra Day, honoring the millions of individuals whose "hoofbeats" represent a rare diagnosis. But the celebration doesn't end at midnight!

As we wrap up January, we are officially galloping into Rare Disease Month. This is our time to shine a spotlight on the 300 million people worldwide living with rare conditions. At Rare Patient Voice, we are dedicated to ensuring your unique "stripes" are represented in vital medical research.

Stay tuned all through February as we share stories, insights, and opportunities for you to make your voice heard! 🧡

01/30/2026

Who else loves taking surveys and sharing their experiences to help others?!?!

01/30/2026

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.

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 ...

01/30/2026

Calling all women: Share your menopause journey! We are looking for female patients diagnosed with hot flashes caused by menopause to share their experiences.

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 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 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 ...

01/29/2026

You can’t control the weather, but you can control how you steady the ship. ⚓️

In the rare disease community, resilience isn’t about stopping the storm, it’s about finding your calm in the middle of it. Take a deep breath today. You’ve got this.

01/29/2026

Caregivers of Children Under 14 Living With Achondroplasia

We’re connecting with families in the U.S. who are willing to share their everyday experiences. By taking part, you can help shape better care, treatment, and support for children and families living with achondroplasia.

💵 Receive $400 for enrolling
🏡 Take part from home, no travel needed
📝 Short surveys you can complete at home (earn up to $120/year)
🤝 Your input helps researchers understand and support families like yours
🔒 Your privacy is always protected. Your contact and health information will never be shared without your consent
👉 Join in here: https://www.rarepatientvoice.com/rp/Platinum

01/29/2026

Your Story. Your Impact. Your Reward.

Rare disease research couldn't happen without the people it affects most. Join a community of over 150,000 patients and family caregivers who are shaping the future of medicine.

How to get started:

1. Click the link below to join.
2. Tell us which conditions you manage.
3. Keep an eye on your inbox for paid study invites!

Register here: https://www.rarepatientvoice.com/rp/PinPost

01/29/2026

🔍 Study Opportunity: Myelodysplastic Syndrome (MDS) 🔍

We’re seeking patients and caregivers to share their experiences in a web-assisted phone interview:
🧑‍⚕️ Patients: 90 minutes
💛 Caregivers: 60 minutes

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 + the study name, and we’ll check your profile to see if you're eligible for an invite.

Let’s work together to make a difference! 🌟