Carter Hemion

Carter Hemion lives with classical Ehlers-Danlos syndrome related to a likely pathogenic COL5A2 variant. They serve as Secretary of the Board for the Collagen Advocacy Network, an organization serving individuals with, and parents of individuals with, genetically defined forms of Ehlers-Danlos syndrome.

Carter comes to disability advocacy from a journalism background and has authored two poetry collections as well as chapters of several rare disease books. They are also the Advocacy & Accessibility Director at Stripes of Solidarity, with a focus on rare disease health equity, and the owner of Story Sprouts LLC, focused on sustainable storytelling for advocacy. Outside CAN, Carter is the Director of Operations at Immunocompromised Association, serving immunocompromised community members by promoting education, raising awareness, and fostering community connections.

Carter supports patient advocacy through federal agencies as an FDA & CTTI Patient Engagement Collaborative member, FDA & NIH CURE ID Patient Engagement Taskforce member, and Department of Defense CDMRP Consumer Reviewer. Carter also supports research as a BMJ Peer Reviewer, research assistant in rare- and chronic-illness-related social and behavioral research, and guest speaker for biopharmaceutical companies and medical conferences.

Carter volunteers as a Speakers Bureau member and Leadership Academy graduate at the EveryLife Foundation for Rare Diseases; Patient Expert in the cEDS Working Group of the International Consortium on EDS & HSD; Patient Engagement Committee member at the International Foundation for Gastrointestinal Disorders; Patient-Caregiver Advisory Board member at the Rare Disease Diversity Coalition; and a volunteer supporting organizations including the NW Rare Disease Coalition, Connective Strength, and Dystonia Advocacy Network.

Carter enjoys working with all kinds of community stakeholders to move forward shared goals of improving the lives of patients and families with disabilities or chronic health conditions. When not working, they can be found birding or enjoying a cup of tea with their cat, Luna.