Donna Sullivan

Donna Sullivan is a filmmaker, rare disease advocate, medical educator and healthcare communications strategist whose work sits at the intersection of storytelling, medicine, and systems change. She is the co-producer of Complicated, the Oscar-qualified feature documentary by Open Eye Pictures that examines the systemic challenges faced by families navigating rare disease at the intersections of healthcare and child protection.

Before moving into nonprofit leadership and advocacy, Donna worked in video production at Sony and later at Cramer, a creative agency that produces films, branded content, and large-scale live events for some of the world’s biggest brands. Her background in media and storytelling now informs her work, translating complex medical and patient experiences into educational initiatives, documentaries, and public conversations designed to improve trust and understanding in healthcare.

As a rare disease mother and caregiver, Donna brings both lived experience and strategic expertise to her work. Over the past decade, she has supported families navigating complex pediatric pain conditions and has become a leading voice addressing the unintended harms that occur when medicine grapples with uncertainty.

Donna is the Founder and Executive Director of ElevateRARE, an educational and consulting non-profit that helps clinicians and medical institutions improve care and safety for patients living with rare diseases and complex conditions.

She serves as the Director of Patient Advocacy at Pathways to Trust, where she helps lead medical education programs focused on the unmet needs of rare disease and marginalized patient populations. She has served for over a decade on the board of The Coalition Against Pediatric Pain (TCAPP), is a board member of The Connective Tissue Coalition (CTC), and holds advisory roles with Mito Action, The AHEAD Coalition of The Ehlers-Danlos Society, and the Providence College School of Nursing and Health Sciences.

Through film, media, education, and advocacy, Donna works to elevate patient voices while helping healthcare systems better understand the realities of complex chronic illness and create supportive systems to improve health outcomes.