who we are
We are
defined by
COLLAGEN.
Advocacy · Education · Research for individuals and families living with genetically defined forms of Ehlers-Danlos Syndrome.
Our Community
Different ≠ less than
We are different, and that's OK.
People with rare forms of EDS are defined by monogenic collagen malformations. That is a different biological mechanism than hEDS/HSD. Differences matter in education, medical care, and research. Our lives depend on it.
A safe community for the minority.
People with rare forms of EDS are now estimated to make up less than 1% of the EDS community. That leaves very few seats at the table for the 1%. We have a seat for you.
We are true representation.
During our first month, our community grew to represent many — lived-experience representation of all 12 rare subtypes, across 5 continents, 11 countries, throughout the lifespan from early childhood to late adulthood.
Who We Serve
12 Genetically Defined Forms of EDS
We serve individuals with and parents of individuals with genetically defined forms of Ehlers-Danlos Syndrome, including:
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.
Join Our Community
Whether you're a patient, parent, clinician, or researcher — there's a place for you in the Collagen Advocacy Network.
Join the Network