How tech is helping rare disease families fight for better care

When Nasha Fitter’s three-year-old daughter got a rare genetic diagnosis in 2017, the internet wasn’t much help. Search results were useless, doctors didn’t know what was coming next, and Facebook groups became the closest thing to a lifeline—even if the advice there wasn’t always reliable. Fitter wasn’t just a parent trying to figure things out; she was a tech entrepreneur who saw a gap in the system. So she co-founded a research group to push for treatments, but she also wondered: what if technology could do more than just connect parents? What if it could actually guide them through the maze of care? That idea led to Citizen Health, a platform built by Fitter and her co-founder Farid Vij. Their goal isn’t just to share information—it’s to turn raw patient data into actionable insights. The AI tool they created doesn’t just answer questions; it schedules appointments, spots red flags in medical records, and even helps families find clinical trials. For rare diseases, where every second counts, these small wins add up. It’s not about replacing doctors—it’s about giving families the tools to demand better care without wasting years figuring it out alone.The platform now hosts over 8, 000 patients across 350 rare diseases, with 98% opting to share their data for research. That data isn’t just sitting idle—it’s being used by drug companies to speed up treatments. One foundation using the platform even cut a $80 million clinical trial cost by using patient data as proof for the FDA, skipping unnecessary steps. That’s not just efficiency; it’s changing how rare diseases are treated forever. But here’s the catch: this system only works if enough families trust it enough to share their stories. Right now, most do—but will that last as AI becomes a bigger part of healthcare? And what happens when insurance companies or hospitals push back against these tools? Progress is happening, but the fight for fair, fast care is far from over.