Donna Sullivan is an advocate for Ehlers-Danlos Syndrome (EDS) and complex pediatric pain patients and has spent over a decade supporting families who have been falsely accused of medical child abuse. She is the Producer of Complicated, an Oscar qualified feature-length documentary by Open Eye Pictures that examines the systemic challenges faced by families navigating rare disease at the intersections of healthcare and child protection. 

As a rare disease mother to three children diagnosed with Ehlers-Danlos Syndrome, POTS, MCAS, and Complex Regional Pain Syndrome, and TD1, she brings both lived experience and strategic expertise to her work helping to reframe rare disease not as a clinical outlier, but as a critical frontier for advancing medical knowledge and health equity.

Donna serves as The Director of Patient Advocacy at Pathways to Trust, where she leads medical education programs designed to teach about the unmet needs of rare disease and marginalized patient populations. She has served for over a decade on the boards of The Coalition Against Pediatric Pain (TCAPP), which advocates for children with severe and complex pain. She is a board member for The Connective Tissue Coalition (CTC), which advances research on EDS and related disorders. She also holds advisory roles with Mito Action, The AHEAD Coalition of the EDS Society, and the Providence College School of Nursing.