Living Rare, Speaking Loud - a Column by Hollie Amadio

Absurd insurance battles are costly for those with rare conditions

For those of us in the rare disease community, battling health insurance companies is not just a story we’ve heard; it’s a reality we live. Denials for lifesaving treatments, endless waits for approvals, and hours spent on the phone advocating to get the care our doctors have already prescribed…

From isolation to community: The power of connection

Living with chronic illness can be profoundly isolating. The physical pain, emotional strain, and constant misunderstanding from the world around us can often leave us feeling that no one truly gets it. But within that loneliness lies a transformative truth: Community changes everything. When we connect with others who…

An advocate is born: My hereditary angioedema diagnosis story

The age of 17 is a time when life should be full of possibilities and new beginnings. But for me, it marked the start of a health battle that took nine long years to name. Living in a group home after giving birth to my daughter six months earlier, I…