05/01/2025
Navigating insurance is tough. Navigating it with a rare disease? Even tougher.
If you’ve faced confusing denials, high out-of-pocket costs, or been told your treatment is “experimental,” you’re not alone—and you do have options.
My latest blog post breaks down why insurance gets so complicated for adults with rare conditions—and how to fight for the coverage you deserve.
From appeal tips to real resources, this post is your step-by-step guide to getting the care your diagnosis requires.
Living Rare, Fighting for CoverageIf you’re an adult living with a rare disease, chances are you’ve already experienced the maze of trying to get a diagnosis. But even after finally naming your condition, the next obstacle often looms large: dealing with health insurance. Whether it’s denials ...