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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 from Rutgers University 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 spending over a decade developing and executing programs across the drug development continuum, Nadia decided to focus on the needs of the global rare disease community through the founding of the Rare Advocacy Movement (RAM). Founded in 2017, today RAM has evolved into a trusted collaborative network of opportunities for community-based and community-focused stakeholders across the rare disease ecosystem.
 
As a community-based patient advocate and activist who was given an "expiration date" back in 2012 due to 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 is dedicated to protecting the best interests of people with rare diseases, disabilities, chronic illnesses, and neurodivergent communities.


Follow Nadia on social media @NadiaBodkin

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The Rare Advocacy Movement (RAM) is the first sustainable rare disease community-based network designed to unite and empower people with lived rare disease experiences.  RAM is dedicated to protecting the fair market value of the community's perspectives, insights and experiences (PIE). All RAM members vow to always act in the best interest of the global rare disease community by abiding by the Code of Conduct for Membership. Violations of the Code of Conduct for Membership shall result in resignation from the RAM membership via majority vote. For those not yet ready for RAM Membership, partnerships and trusted stakeholder options are available through Rare360.

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© Copyright 2017-2025. Rare Love Ventures. All rights reserved in partnership through RARE360.

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