Madison Bowe

Rare Disease Advocate | Patient Leader | Emergency Services Student

Madison Bowe is a passionate advocate and emerging leader in the rare disease community, living with Stiff Person Syndrome (SPS)—a one-in-a-million autoimmune neuromovement disorder—along with Gastroparesis and other rare comorbidities. Diagnosed at 29, Madison has transformed her personal health challenges into a mission to improve access, equity, and compassionate care for all individuals living with rare diseases in Nevada.

Drawing on her background in Emergency Services and her lived experience as both a patient and advocate, Madison brings a unique perspective to the Nevada Rare Disease Advisory Council. She is committed to advancing policies that enhance emergency response protocols for rare disease patients, reduce barriers to transportation and continuity of care, and improve the cultural and linguistic inclusivity of healthcare resources across Nevada.

Madison serves as an active participant in Rare Across America and the Rare Disease Legislative Advocates (RDLA) Young Adult Representatives of Rare Diseases (YARR) program through the EveryLife Foundation for Rare Diseases, where she mentors, educates, and collaborates with advocates nationwide on legislative initiatives such as the Safe Step Act. She has also contributed to Global Genes’ Rare Compassion Program, helping medical students better understand the human experience behind rare diagnoses and the importance of empathetic, patient-centered care.

As a woman of Hispanic and African American heritage, Madison is a strong voice for diversity and equity within the rare disease community. She is developing initiatives to expand access to Spanish-language resources and culturally responsive outreach for patients and families in Nevada.

Madison’s passion, resilience, and firsthand understanding of systemic challenges make her a vital advocate for building a more inclusive, informed, and compassionate rare disease ecosystem—one where every patient’s voice is heard and valued.