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community advocates

Nadia Bodkin, PharmD, MS

Community Leader
President and Chief Executive Officer
EDSers United
10 Schalks Crossing Road
Suite 501-283
Plainsboro, New Jersey, United States

Nadia is a seasoned rare disease advocate, born with Ehlers-Danlos Syndrome, Alpha1 Antitrypsin Deficiency, and Beta-Thalassemia, 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. She further conveys her dedication to the EDS community in being a member of the Community Engagement and Curation Advisory Councils for oneEDSvoice.com.

She can be found on the various social media sites. Below is a short list of some sites you’ll find her on.

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