Nadia Bodkin | Founder, EDSers United & Community Engagement Team Leader
rareLife solutions

Nadia Bodkin, Founder, EDSers United & Community Engagement Team Leader, rareLife solutions

Nadia is a seasoned rare disease advocate, born with 3 debilitating rare diseases complicated by several associated conditions. Of course that didn’t stop her! She served as the chairperson for Rare NJ, a rare disease advocacy coalition and was the Executive Director for the Rare Disease United Foundation. She also founded and has been directing EDSers United, a rare disease patient advocacy organization focused on Ehlers-Danlos Syndrome. Nadia earned her doctorate in Pharmacy and masters in genetics from Rutgers University, New Brunswick. Now at rareLife, Nadia leads our collaborative work with all of the onevoice communities formulating and implementing engagement and retention strategies specific to the particularities of each rare disease. Nadia is determined to make a difference in the lives of those affected by rare conditions by passionately advocating for all of her fellow rare disease patients through her continued love for science and collaboration.


Day 1 Orphan 14th Nov @ 14:45

Developing endpoints for clinical trials that are meaningful to patients

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