Nadia Bodkin | Founder, EDSers United & VP of Special Markets

Nadia Bodkin, Founder, EDSers United & VP of Special Markets, MAXIFYLIFE

Nadia, born with several rare genetic conditions herself, is a seasoned rare disease advocate. She served as the chairperson for Rare NJ, a rare disease advocacy coalition and founded and is the director of EDSers United, a patient advocacy organization focused on Ehlers-Danlos Syndrome and other rare genetic conditions. She further conveys her dedication to the chronically- ill community, as a board member for Chronic Connect. In addition to leading community outreach and engagement efforts and formulating and implementing collaborative advocacy programs specific to the particularities of the rare disease community for various rare disease focused companies, Nadia also works with the The Jansen’s Foundation as the Corporate Engagement Manager. 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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