Nadia is a dedicated rare disease activist living with three rare genetic conditions. Her journey into patient advocacy began while studying pharmacy at Rutgers University. After graduating, she entered the rare disease ecosystem through executive leadership roles in various advocacy organizations, where she developed numerous community-focused campaigns, programs, and initiatives in partnership with industry and academic stakeholders—all with a singular goal: to support and empower individuals within the rare disease community.

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With over a decade of experience designing and implementing initiatives across the therapeutic development continuum, Nadia founded the Rare Advocacy Movement (RAM) in 2017 to address the evolving needs of the global rare disease community. RAM has since grown into a global collaborative network that creates opportunities for community-based and community-focused stakeholders across the ecosystem.

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Given a prognosis in 2012 that framed her life in finite terms, Nadia lives with urgency and intention. She continues to advocate fiercely for the rights and well-being of people affected by rare diseases, disabilities, chronic illnesses, and neurodivergence—driven by a personal mission to make every moment count.

Follow Nadia on social media @NadiaBodkin.