Nadia Bodkin, Pharm.D., M.S.
Nadia is a seasoned rare disease patient advocate, born with three main rare conditions herself. Immediately after graduation, Nadia went straight into advocacy through EDSers United, a foundation she founded as a student. Nadia has held leadership positions at several rare disease advocacy focused organizations assisting in everything between nonprofit management to event planning. She is currently the Chief Executive Officer for Blaze Therapeutics and is one of the founding members of New Love Ventures. Nadia also founded and currently facilitates the coordination of the Rare Advocacy Movement's activities along with her fellow RAM colleagues.
As a result of the combination of the co-morbidities associated with her genetic conditions, Nadia's life expectancy was not expected to extend past December, 2012. During a span of six months, Nadia put her medical education and research background to use and was able to effectively expand her life expectancy and found several philanthropic initiatives. Nadia functions on the premise that she is to make the most of the remainder of her life that she terms as "borrowed time". With this time, Nadia is determined to make a difference in the lives of those affected by rare conditions, U.S. Veterans, and other like-minded individuals through advocacy and facilitating collaboration amongst all human-focused stakeholders that aim to improve lives.
Follow Nadia on social media @NadiaBodkin
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The Rare Advocacy Movement (RAM) is a patient advocacy initiative focused on documenting the evolving complex structure and unique dynamics of the rare disease patient advocacy landscape. RAM serves as a Center of Insight (COI) for those interested in participating in collaborative patient advocacy initiatives and working groups within the rare disease industry. The RAM membership is comprised of a network of patient advocacy professionals that have vowed to abide by the established Code of Conduct for Membership.