The
Do No Harm
Project

A child with rare disease

The rare disease patient experience

Donna Sullivan is a proud mom of three kids living with Ehlers-Danlos Syndrome (EDS), 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 for over a decade, and and sits on the boards of several rare disease organizations including for The Connective Tissue Coaltion, 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 the Do No Harm Project, a rare disease patient-led effort to improve access to care and safety for families living with rare disease.

Donna is also the consulting producer on the documentary film, Complicated, an exploration of the EDS experience currently in production by Open Eye Pictures.

Donna’s past job titles have included Marketing Manager, Account Director, Writer, Content Producer, Community Manager and BIG IDEA gal!

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