Carter Hemion

Carter Hemion
Carter Hemion
Rare Disease Patient Advocate

Carter Hemion is a young adult rare disease patient advocate and writer. Carter learned they were born with classical Ehlers-Danlos syndrome at 20 years old, which opened the door to understanding and identifying a plethora of comorbidities. Many of their related chronic conditions, like gastroparesis, MCAS, and POTS, went untreated for months or years because of delays in diagnosis. Carter is passionate about self advocacy, mental health, and using writing to advocate for change. Following their long diagnostic odysseys for their rare diseases, Carter joined YARR (Young Adult Rare Representatives) at the EveryLife Foundation for Rare Diseases and began focusing their energy to advocating with other rare disease patients and organizations. They graduated from the YARR Leadership Academy in 2022 and are an active member of the EveryLife Foundation's Speakers Bureau. Carter worked with Governor Inslee to recognize Ehlers-Danlos syndromes and Hypermobility Spectrum Disorder Awareness Month in Washington State in 2022 and 2023 so less patients in the future will have to go as long without recognition, and they advocate in support of their state organizations like the NW Rare Disease Coalition and Eastside EDS. They also advocate for cEDS and comorbidities at a federal level through writing articles, speaking, meeting with legislators, and collaborating with other rare disease advocates.

The Rare Fair 2023