Carter Hemion (they/he/it)

Carter Hemion is a speaker, writer, disability advocate, and lifelong rare disease patient. Carter was born with classical Ehlers-Danlos syndrome, a rare genetic connective tissue disorder affecting type V collagen, and has developed a number of rare but commonly co-occurring disorders as a result. 

As a rare disease advocate, Carter is especially interested in the intersections of rare diseases with LGBTQIA+ identity and neurodivergence & madness. They currently serve as the Community Engagement Director at Immunocompromised Association to serve immunocompromised community members by promoting education, raising awareness, and fostering community connections. They hold several other patient advocacy roles, including being a DOD CDMRP Consumer Reviewer, FDA & CTTI Patient Engagement Collaborative member, YARR Advisory Committee member, and Patient Expert for the cEDS working group in the International Consortium on EDS & HSD.

At home in Washington state, Carter advocates in support of organizations like the NW Rare Disease Coalition and Connective Strength for equitable care access and shortening the diagnostic odyssey. They take actions through writing, public speaking engagements, event organizing, creative storytelling, and meeting with legislators.

Carter comes to disability advocacy from a writing background with experience publishing work in a variety of different writing styles. Their debut poetry chapbook, Allergic to Sanity, chronicles their experiences with neuropsychiatric symptoms of mast cell activation. Carter embraces being a queer, mad creator with a drive to use storytelling for a gentler world.