Nadia is a seasoned rare disease advocate and activist, 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 numerous 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.
