Michele Rayes

My disease once caused debilitating muscle cramps, throat spasms, and made even simple tasks—like carrying groceries or lifting my child—impossible. I struggled with chronic fatigue, frequent hospitalizations, kidney stones, calcium deposits in my eyes, and more.

Four years ago, I was fortunate to join a clinical trial that completely transformed my life. After living with this condition for 25 years, I finally felt "normal." My disease is no longer constantly on my mind or a struggle. This experience has ignited my passion to advocate for others—educating patients and healthcare providers, and working to make a meaningful impact on how our disease is understood and treated.

I started advocating for an FDA-approved treatment for my disease, while also working to educate healthcare providers about how the disease impacts patients' daily lives—far beyond the list of symptoms in a textbook. Along the way, I gained invaluable insights not only into my own condition, but also into the broader landscape of chronic and rare diseases and the complexities of our healthcare system. This experience ignited a passion for public policy issues, such as PBM reform, Medicaid benefits, pediatric priority review vouchers, and more.

I quickly realized how much reform is needed within our healthcare system and how little patients truly understand about how it operates. As a result, I began focusing on teaching self-advocacy to fellow patients. It’s crucial for all of us to grasp why our healthcare and medications are so expensive or sometimes not covered, why our providers may struggle to understand our diseases, and how to effectively approach them. Most importantly, I’ve learned how one voice can drive meaningful change—whether in influencing legislation or improving our personal healthcare journeys.