Hollie Amadio

I’m Hollie Amadio, a patient advocate, patient leader, and single mom of four living with hereditary angioedema (HAE) and multiple sclerosis (MS). Like many people in the rare disease community, my path to diagnosis wasn’t straightforward. Years of unexplained symptoms, uncertainty, and learning to navigate a complicated healthcare system shaped not only my journey, but also my purpose.

Living with both rare and chronic illnesses has taught me that the challenges extend far beyond the physical symptoms. I’ve experienced the emotional weight of uncertainty, the frustration of insurance barriers, the mental health struggles that can accompany chronic illness, and the constant balancing act of caring for myself while showing up for my family and my community.

Those experiences are what drive my advocacy today. I’m passionate about raising awareness of hereditary angioedema, supporting mental health conversations within the chronic illness community, and helping patients feel empowered to advocate for themselves. I believe that sharing our stories openly and honestly helps reduce isolation and reminds others that they are not alone in what they’re facing.

My advocacy has taken me from patient support and community engagement to legislative discussions and policy advocacy, where I work to amplify patient voices and push for meaningful change. My goal is simple: to use my lived experience to help others find resources, build confidence, feel understood, and know that their voice matters.

Rare diseases may be uncommon, but the people living with them deserve to be seen, heard, and supported. That’s why I continue to speak up, share my story, and advocate for a future where no one has to fight their illness and the system at the same time.

Click here to read all of Hollie's articles on Hereditary-Angioedema.net