The Ehlers-Danlos Society Centers and Networks of Excellence Program

The Ehlers-Danlos Society C.A.R.E. Model 

Care 

Each Center or Network will commit to providing exceptional care to the community through listening, validating and offering care and management options through:

• Offering multidisciplinary care, either at a Center or as part of a Network.
• Committing to diagnosing using only the 2017 internationally peer-reviewed criteria, management, and care guidelines.
  • Acknowledging the same commitment for any future updated work that replaces the 2017 criteria.
• Facilitating a patient-centered approach, including administration of patient feedback surveys, questionnaires and other care assessments.
• Addressing the broad spectrum of symptoms and treatment options including comorbidities.

Access

CNEs will provide needed access to EDS and HSD healthcare professionals across geographies, specialties, and referral pathways. Each CNE will be inclusive and work with the Society’s DEI policies to ensure that care reaches underserved communities by:

• Offering telehealth in all geographies where it is possible.
• Occupying physical spaces with disability access and the ability to offer adaptations when needed.
• Engaging in collaborative resource sharing and networking to improve patients’ access to care.

Research 

Contribution to EDS and HSD research is fundamental to the CNE program mission. CNEs will contribute to research generation and dissemination of research findings in partnership with the Ehlers-Danlos Society and other collaborators through:

• Enabling processes for each patient to engage in research activities.
• Encourage all patients to sign up to the EDS & HSD DICE Global Registry.
• Assessing patient interest in future study or survey participation.
• Conducting research where possible, whether clinical trial or investigator-initiated.
• Showing a commitment to contribute to published collaborative research in peer-reviewed journals or equivalent processes.

Education 

CNEs will demonstrate an ongoing commitment to continuing education through EDS ECHO, and will also integrate educational approaches into Center or Network operations by:

• Attending the annual CNE Conference to teach and learn.
• A demonstrated commitment to community education.
• Multidisciplinary case discussions and a commitment to clinical training.
• Where possible, providing training opportunities for students and healthcare professionals.

To support this program, please contact [email protected]