Carter Hemion is the Director of Operations at Immunocompromised Association to serve immunocompromised community members by promoting education, raising awareness, and fostering community connections. They come to disability advocacy from a journalism background and have authored two poetry collections as well as chapters of several rare disease books. With a passion for storytelling, Carter works to develop new resources, plan monthly and annual events, and support daily operations to enhance the livelihood of the immunocompromised community. Carter lives with multiple disabilities, including an immune disorder.
Outside Immunocompromised Association, Carter currently holds other advocacy roles to support innovation and engagement between community members. They support federal agency advocacy as a FDA & CTTI Patient Engagement Collaborative Member, FDA & NIH CURE ID Patient Engagement Taskforce, and Department of Defense CDMRP Consumer Reviewer.
Carter supports research as a BMJ Peer Reviewer, Research Assistant in rare & chronic illness-related social & behavioral research, and guest speaker for biopharmaceutical companies and medical conferences.
They are also the Advocacy & Accessibility Coordinator and podcast co-host at Stripes of Solidarity and business owner for Story Sprouts LLC.
In the nonprofit space, Carter is the Secretary of the Board for the Collagen Advocacy Network, an organization to serve individuals with and parents of individuals with genetically defined forms of Ehlers-Danlos Syndrome.
They are also 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 International Foundation for Gastrointestinal Disorders; Rare Disease Diversity Coalition member; and a volunteer in support of organizations like the NW Rare Disease Coalition, Connective Strength, and Dystonia Advocacy Network.
Carter enjoys working with different kinds of community stakeholders to move forward our shared goals of improving the lives of patients and families with all kinds of disabilities or chronic health conditions.