Marina Lombardi (they/them; she/her) is a patient expert, disability justice activist and advocate. Their work encompasses EDS/HDS, rare disease and patient advocacy, legislative activism in the field of public health and education outreach. Marina is a former Emergency Medical Technician and Firefighter. Their interest in mental health led to authoring “It’s My Divorce Too: divorce from a child’s perspective” as a teenager which provided opportunities to address families nationally both in person and on the radio. Marina worked on the Education Outreach team for Concussion Legacy Foundation presenting in Philadelphia area schools on awareness and prevention of sports related traumatic brain injuries.
Marina is active as a volunteer with The Ehlers-Danlos Society. They are an alum of the Advocacy ECHO program, 2020 Virtual Summer Conference speaker and member of the newly developed Breaking Down Barriers Coalition working to address numerous barriers in access to care that many people with disabilities, chronic illnesses and rare diseases face. Marina is a classically trained musician who uses their skills to teach and manage a non-profit cultural arts organization in rural New York. Their mission is providing accessible arts education and performance to youth and adults with varying physical and developmental needs.