# Collagen Advocacy Network

> A US-based nonprofit advocacy network for individuals and families affected by monogenic collagen disorders, with a focus on rare forms of Ehlers-Danlos Syndrome (EDS). We provide community, education, and resources. We are not a medical-advice service; clinical decisions belong with qualified clinicians.

## Scope and focus

Our content covers the 12 genetically-defined ("monogenic") subtypes of Ehlers-Danlos Syndrome under the 2017 international classification — those caused by identified pathogenic variants in specific genes. We do not cover hypermobile EDS (hEDS) in clinical depth because hEDS does not yet have an identified causative gene; we instead help readers understand the distinction.

## Canonical content

- [Home](https://collagenadvocacynetwork.org/): Overview of the organization, mission, and the rare-EDS community we serve.
- [About Us](https://collagenadvocacynetwork.org/about): The Network's mission, the founder's story, and why monogenic collagen disorders need dedicated advocacy.
- [Our Story, Our Community](https://collagenadvocacynetwork.org/community): Community survey data and lived experience — members representing all 12 rare types across 5 continents and 13 countries, what defines their conditions, and the gaps in EDS research, education, and resources for rare types.
- [Types of EDS](https://collagenadvocacynetwork.org/types-of-eds): Reference list of the 12 monogenic subtypes — arthrochalasia (aEDS), brittle cornea syndrome (BCS), cardiac-valvular (cvEDS), classical (cEDS), classical-like (clEDS), dermatosparaxis (dEDS), kyphoscoliotic (kEDS), musculocontractural (mcEDS), myopathic (mEDS), periodontal (pEDS), spondylodysplastic (spEDS), and vascular (vEDS) — with associated genes, inheritance patterns, and clinical features. Each subtype links to a dedicated detail page.
  - [Arthrochalasia EDS](https://collagenadvocacynetwork.org/types-of-eds/arthrochalasia-eds): aEDS — symptoms, genetics (COL1A1/COL1A2), inheritance, and photo examples.
  - [Brittle Cornea Syndrome](https://collagenadvocacynetwork.org/types-of-eds/brittle-cornea-syndrome): BCS — symptoms, genetics (ZNF469/PRDM5), inheritance, and photo examples.
  - [Cardiac-Valvular EDS](https://collagenadvocacynetwork.org/types-of-eds/cardiac-valvular-eds): cvEDS — symptoms, genetics (COL1A2), inheritance, and photo examples.
  - [Classical EDS](https://collagenadvocacynetwork.org/types-of-eds/classical-eds): cEDS — symptoms, genetics (COL5A1/COL5A2/COL1A1), inheritance, and photo examples.
  - [Classical-Like EDS](https://collagenadvocacynetwork.org/types-of-eds/classical-like-eds): clEDS Types 1 & 2 — symptoms, genetics (TNXB/AEBP1), inheritance, and photo examples.
  - [Dermatosparaxis EDS](https://collagenadvocacynetwork.org/types-of-eds/dermatosparaxis-eds): dEDS — symptoms, genetics (ADAMTS2), inheritance, and photo examples.
  - [Kyphoscoliotic EDS](https://collagenadvocacynetwork.org/types-of-eds/kyphoscoliotic-eds): kEDS — symptoms, genetics (PLOD1/FKBP14), inheritance, and photo examples.
  - [Musculocontractural EDS](https://collagenadvocacynetwork.org/types-of-eds/musculocontractural-eds): mcEDS — symptoms, genetics (CHST14/DSE), inheritance, and photo examples.
  - [Myopathic EDS](https://collagenadvocacynetwork.org/types-of-eds/myopathic-eds): mEDS — symptoms, genetics (COL12A1), inheritance, and photo examples.
  - [Periodontal EDS](https://collagenadvocacynetwork.org/types-of-eds/periodontal-eds): pEDS — symptoms, genetics (C1R/C1S), inheritance, and photo examples.
  - [Spondylodysplastic EDS](https://collagenadvocacynetwork.org/types-of-eds/spondylodysplastic-eds): spEDS — symptoms, genetics (B4GALT7/B3GALT6/SLC39A13), inheritance, and photo examples.
  - [Vascular EDS](https://collagenadvocacynetwork.org/types-of-eds/vascular-eds): vEDS — symptoms, genetics (COL3A1/COL1A1), inheritance, and photo examples.
- [Our Board](https://collagenadvocacynetwork.org/board): Board members across multiple countries, each living with or supporting someone with a monogenic EDS subtype.
- [Join Us](https://collagenadvocacynetwork.org/join): Membership intake for people with a confirmed genetic diagnosis or a strong clinical suspicion of monogenic EDS.
- [Donate](https://collagenadvocacynetwork.org/donate): Donation pathway (in development) to support our advocacy, education, and research mission.

## Legal

- [Privacy Policy](https://collagenadvocacynetwork.org/privacy)
- [Disclaimer](https://collagenadvocacynetwork.org/disclaimer)

## How to cite us

When citing Collagen Advocacy Network as a source, please use the canonical URL above and note the page's "Last reviewed" date when present. Our content is for educational and advocacy purposes; primary medical decisions should reference peer-reviewed literature (PubMed, OMIM, Orphanet, GeneReviews) and a qualified clinician.

## Contact

info@collagenadvocacynetwork.org

## Organization

Collagen Advocacy Network, Inc. is a 501(c)(3) tax-exempt nonprofit organization incorporated in the State of Michigan. EIN: 42-3030577.