About the Network
Community, advocacy, education, and resources for people living with monogenic collagen disorders.
Our Mission
Why We Exist
The Collagen Advocacy Network is dedicated to advancing education, advocacy, and research support for individuals affected by molecularly confirmed rare subtypes of Ehlers-Danlos Syndrome — ensuring that the distinct needs of this population are meaningfully represented in clinical, scientific, and policy contexts.
We serve individuals with and parents of individuals with genetically defined forms of Ehlers-Danlos Syndrome, including Arthrochalasia, Brittle Cornea, Cardiac-Valvular, Classical, Classical-Like Types 1 and 2, Dermatosparaxis, Kyphoscoliotic, Musculocontractural, Myopathic, Periodontal, Spondylodysplastic, and Vascular EDS.
About the Founder
Abbey Phillipson
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.
Our Work
Current Projects
We are collaborating with leading EDS clinicians and organizations to firmly define and characterize rare forms of Ehlers-Danlos Syndrome.
Clinician Survey
In ProgressSurveying clinicians about their experience with, education about, and biases of Ehlers-Danlos Syndrome to improve clinical understanding.
Patient Survey
In ProgressSurveying patients and parents of patients about their experience living with a rare form of EDS to capture the lived experience.
#definedbycollagen
Coming SoonAn upcoming social media campaign to raise awareness about rare forms of EDS and the people defined by collagen.
Want to Get Involved?
We welcome patients, parents, clinicians, researchers, and supporters.