PatientWing

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.

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