About
Abbey Phillipson, born with Classical Ehlers-Danlos Syndrome, is a rare-type Ehlers-Danlos syndrome (EDS) advocate. After the recent growth in misunderstanding and mistreatment of rare forms, she is dedicated to addressing the medical and community erasure that people with rare EDS subtypes often experience through collaboration with leading EDS clinicians and organizations. She founded Collagen Advocacy Network to create a space where individuals with genetically confirmed EDS types can have a voice in the community and where the important distinctions between monogenic EDS, hypermobile EDS (hEDS), and hypermobility spectrum disorders (HSD) can be clearly understood.