Donna Sullivan | Director of patient advocacy
Pathways to Trust

    Donna Sullivan is patient advocate, medical educator, writer, film producer, speaker and the proud mom of three kids navigating life with Ehlers Danlos Syndrome. As a trailblazing health advocate, Donna has spent over a decade working to raise awareness of the unique access to care challenges faced by families dealing with Ehlers-Danlos Syndrome, complex pain conditions, and rare diseases. After 9 years, Donna is proud to be releasing a feature length documentary film, Complicated, which she co-produced with Oscar shortlisted film Director Andrew Abrahams of Open Eye Pictures. This film premiered at the prestigious Slamdance film festival in February 2025 and will be released later this year.  Complicated seeks to raise awareness of the seriousness of Ehlers Danlos Syndrome and give voice to a young population of patients impacted by the challenges that this historically misunderstood, underfunded and mistreated genetic condition has created for both patients and healthcare providers.  Donna has recently co founded Elevate Rare, a patient led non profit whose mission is to raise awareness of harmful care gaps in rare disease.  For the past twelve years, Donna has volunteered as a board member for The Coalition Against Pediatric Pain. She is also the Director of Patient Advocacy for Pathways to Trust, a non-profit that educates healthcare providers and medical students about the unmet needs of marginalized patient populations. She's serves on the board for the researched based Connective Tissue Coalition, and she is on the advisory board for the new nursing program at her alma mater, Providence College. Donna is also a member of the EDS Society AHEAD Coalition.