Nadia Bodkin, Pharm.D., M.S.
Nadia is a seasoned rare disease experience professional, born with three rare genetic conditions. Nadia went straight into professional patient advocacy post-graduation through a foundation she founded as a pharmacy student called EDSers United. Since entering the rare disease ecosystem through the EDS community, Nadia has held numerous executive leadership positions within various rare disease patient advocacy focused organizations, developing several community-focused campaigns, programs and initiatives in collaboration with industry-based and academic-based stakeholders, all of which have consistently had one goal in common: supporting the people of the rare disease community.
After conducting landscape analysis, executing nonprofit business growth and development strategies, digital health community development and engagement protocols, biopharmaceutical therapeutic development and commercial access programs, and other executive level activities across the drug development continuum, Nadia decided to work with the global rare disease community in the founding of the Rare Advocacy Movement (RAM). Through the unified community-focused effort to eliminate toxic silos and expedite the processes that connect patients to safe and effective treatment options, RAM has evolved into a trusted collaborative network of opportunities for community-based and community-focused stakeholders across the rare disease ecosystem.
As a seasoned community-based patient advocacy professional who was given an "expiration date" back in 2012 as a result of her progressive medical condition, Nadia functions on the premise of making the most of the extra time she has been gifted. As a result, Nadia has dedicated her extra time to establishing protecting the best interests of the people of the rare disease, disability, chronic illness and neurodivergent communities.
Follow Nadia on social media @NadiaBodkin.