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Learn more about the importance of clinical research and education for the rare disease community. PatientWing helps you find and enroll in clinical trials.

05/24/2026

The model minority myth doesn't make us healthier. It just makes our health harder to see.This AAPI Heritage Month, we're talking about kidney disease in Asian American families. The conditions that show up more often than people realize. The research we're missing from. The conversations our families don't have.A rare kidney disease called primary membranous nephropathy, or PMN, appears more often in people of Asian ancestry. Most families have never heard of it. AAPI communities are also underrepresented in the research shaping how kidney diseases get diagnosed and treated.We wrote a full piece on what to know, what to ask, and how to start the conversation in your family.👉 Read it here: https://www.patientwing.com/blog/kidney-disease-in-asian-american-families-what-were-not-talking-about

05/20/2026

Happy Clinical Trials Day. 💚
Today marks the anniversary of the first clinical trial back in 1747, and we're using it to say thank you to the people who keep research moving forward. The patients who raise their hands, the caregivers who go with them, the coordinators who answer every question, and the teams working behind the scenes.
Every treatment in your medicine cabinet started with someone saying yes.

05/01/2026

Gout isn't just "bad toe pain." It's a type of inflammatory arthritis caused by uric acid crystals that build up in your joints. And when a flare hits, it can stop you in your tracks for days or even weeks.
Some people say the pain gets so bad that even a bedsheet touching the joint is unbearable.
Here's the good news. There are treatments that can lower uric acid and calm the inflammation down. Researchers are working on better options too. They just need patients to help.
If you're living with gout, you might be eligible for a clinical study near you. 🔗 https://www.patientwing.com/conditions/gout

04/22/2026

At 21, Rebecca Uhl discovered she had a congenital chest wall condition called pectus excavatum. Her heart was running out of room — and she had no idea.
What followed was surgery at Mayo Clinic, a recovery that tested her, and a mentor who believed in her before she believed in herself. Thirteen years later, Rebecca is a Patient Marketing Executive at PatientWing, spending her days building resources, connecting patients to research, and reminding anyone who will listen that they do not have to figure it out alone.
Her patient experience became her expertise. Read her full story at the link below.
https://www.patientwing.com/stories/from-patient-to-purpose-how-one-diagnosis-shaped-a-career-in-patient-advocacy

03/26/2026

Today is Wear Purple Day 💜 and the PatientWing team is showing up for the epilepsy community.
50 million people worldwide live with epilepsy. Many of them are still searching for answers, better treatments, and access to research that could change their lives. That's exactly why we do what we do.
Happy Wear Purple Day to every patient, caregiver, and advocate out there. We see you. 💜

03/19/2026

In April 2024, Kathy Goebel woke up one morning and noticed her eyes had turned yellow. Within hours, her skin had changed color and she could barely move. "It felt like my body was shutting down," she said.
What followed was weeks of hospitalization, multiple procedures, and a diagnosis she never saw coming: severe sudden-onset autoimmune hepatitis, with advanced liver damage already present.
Kathy's recovery has been a long road, but she has stayed proactive, keeping up with her bloodwork every three months and staying connected to the AIH community. And through all of it, her perspective has stayed grounded: "You don't have to look far to find people facing even greater challenges. That gives you perspective."
Read Kathy's full story here: https://www.patientwing.com/stories/when-everything-changed-overnight-kathy-goebels-sudden-onset-of-autoimmune-hepatitis

03/08/2026

This International Women's Day, we asked the women of PatientWing three questions. What does this work mean to you? What advice would you give to a woman earlier in her career? And what does March 8th really mean?
The answers were honest, thoughtful, and worth reading in full. Head to our blog to meet the women behind the mission.
🔗 www.patientwing.com/blog/the-women-of-patientwing-what-international-womens-day-means-to-us

02/28/2026

February 28th is Rare Disease Day — a global moment to stand with the 300 million people worldwide living with a rare disease. Many are still searching for a diagnosis, a treatment, or just someone who understands.
At PatientWing, connecting those patients to clinical research is at the heart of everything we do.
Happy Rare Disease Day from our whole team. 💙

02/27/2026

PatientWing was honored to join Rare Disease Day at the National Institutes of Health (NIH) DC campus alongside patients, advocates, and researchers. It was inspiring to be a part of the meaningful conversations and especially amazing to reconnect with Lindsay Guentzel, whose voice continues to empower many in the rare disease community

Events like these reinforce an important truth: progress in healthcare starts by listening to patients and we’re committed to turning innovation into meaningful impact for the people it is meant to serve.

02/25/2026

With Rare Disease Day just around the corner (February 28), we're proud to spotlight Ruchi Ambike, a patient whose diagnosis became the foundation for something so much bigger.
Ruchi was diagnosed with IgA nephropathy, a rare autoimmune kidney disease, back in 2001. For years, she didn't know enough to ask the right questions. She felt fine, life moved forward, and her disease stayed in the background. Until it couldn't anymore.
After two pregnancies complicated by preeclampsia, a COVID-related decline into stage four kidney disease, and an emotional breaking point in her nephrologist's office, Ruchi found something that changed everything: a room full of people who understood.
Now she's Canada's first IgA Nephropathy Foundation patient ambassador, a national advocate pushing for treatment access and equity, and a powerful reminder that patients deserve more than just a diagnosis name.
Read Ruchi's full story here → https://www.patientwing.com/stories/from-quiet-symptoms-to-collective-strength-how-iga-nephropathy-shaped-ruchi-ambikes-path-to-advocacy

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