Donna Sullivan is a rare disease and Ehlers-Danlos Syndrome caregiver: the proud mom of three kids living with EDS and rare disorders, and a pioneering advocate raising awareness of the needs of children and families living with EDS, complex pain conditions and rare disease.
She has served as a board member for The Coalition Against Pediatric Pain (TCAPP) for over a decade, and and sits on the boards of several rare disease organizations including for The Connective Tissue Coalition, Merlin’s Kids Service Dogs, and she is a member of The AHEAD Coalition for The Ehlers-Danlos Society.
Donna is the Director of Patient Advocacy for Pathways To Trust, a non-profit that educates healthcare providers about the unmet needs of marginalized patient populations. She is also a founding member of ElevateRARE, an educational think tank focused on the unmet needs of people with rare, undiagnosed, and multi-systemic disorders and on the providers trying to care for them. .
Donna is also the consulting producer on the documentary film, Complicated, an exploration of the EDS experience by Open Eye Pictures. Donna was instrumental in finding and persuading families to come forward and share their experiences. The film documents the complicated odyssey of teenagers who grew up over the eight years that went into filming their complicated medical odyssey with EDS. After its World Premiere at the Slamdance Film Festival, it has won a series of a awards: winner of the Remi Award Worldfest at the Houston International Film Festival, Finalist at ReelAbilities Film Festival and more. This film is available for private showings through the ElevateRARE website, along with complementary programs on patient trauma and patient and provider communication. Parents involved in the film are available for speaking engagements as part of these programs.
Even as a rare disease and Ehlers-Danlos Syndrome caregiver, Donna’s past job titles have included Marketing Manager, Account Director, Writer, Content Producer, Community Manager and BIG IDEA gal!
