Our family spent nearly three years trying to figure out what was causing my son's pain. We saw specialists, ran tests, and searched for answers, but the disease is rare and difficult to identify. It is a diagnosis of exclusion, which means doctors must first rule out other possible causes before arriving at the right one. Pediatricians may not be familiar with it, and MRI scans, which are essential for detecting lesions, can be hard to access or approve.
When we finally received the diagnosis of chronic recurrent multifocal osteomyelitis, a rare autoinflammatory bone disease, we were relieved to have an answer and also frustrated. There was no single place to track his symptoms, medications, imaging results, and flare patterns. Each doctor visit felt like starting from scratch. We were the only record of what had happened, and we were not a reliable one.
I built this app to make that experience easier for other families. It helps parents and patients record what happens each day, see how things change over time, and share a clear summary with their care team. It started as CRMO Care, built with CNO families. It is now FlarePath, because the pattern of a flare is the thing worth tracking, and because the platform is designed to support additional conditions over time. The current beta remains focused on CNO/CRMO.