Program Information 

The CORE (Collaboration, Outreach, Research & Education) Network of Excellence is a global network of healthcare professionals who accelerate access to care through collaboration, peer-to-peer education, and global research.  

Addressing access to care through research & education

The CORE Program, formerly the CNE Program, was created to address the deep need for improved access to care globally for those who live with EDS and HSD. By creating this platform for collaboration between healthcare professionals around the world, we believe we can:

  • Deepen clinical understanding of EDS & HSD diagnosis and management
  • Identify opportunities for systemic improvements
  • Advocate for change with data-driven insights

To read more about how our CORE Network of Excellence Program was formed, click here.

About our designation

Each CORENetwork member must meet specific criteria and undergo a thorough review before receiving the CORE Network of Excellence designation. Our criteria are designed to be inclusive and promote equitable care around the world. They do not replace or replicate any similar programs run by regional, national, or governmental bodies.

The Ehlers-Danlos Society now has 37 CORENetwork of Excellence Program in 11 countries. CORE Members represent a wealth of expertise across many areas of care delivery. Together, they make a crucial step towards achieving our mission of increasing the availability of clinical services, decreasing the diagnostic odyssey, and standardizing communication and care for those impacted by EDS and HSD.

Disclaimer

The Ehlers-Danlos Society does not have any ownership or direct financial interest in any of the specific doctors or clinics designated as members of the CORE Network of Excellence. The Ehlers-Danlos Society does not endorse, recommend, or certify any of these physicians. Membership in this program is recognition of satisfaction of the CORE Program designation criteria, and The Ehlers-Danlos Society does not guarantee or make any warranties, express or implied, as to the quality of medical advice or care given by any listed physician. The information listed in the results is based solely upon the data entered by the participating CORE Network member. Feedback related to the care received at a CORE Network site should be directed to the clinic/practice to ensure proper processing of protected health and/or personal information.

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

At The Ehlers-Danlos Society, we CARE – We are driving forward Care, Access, Research, and Education, and are committed to changing the lives of people impacted by EDS and HSD. Information about the C.A.R.E Model can be found here. Read below for more information about how the CORE Network of Excellence supports our organization-wide model.

Care

Each CORE Member will commit to providing exceptional care to the community through listening, validating and offering care and management options through:

  • 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.

Access

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

  • Engaging in collaborative resource sharing and networking to improve their delivery of care.
  • Participating in research and peer-to-peer education to generate data that accelerates advocacy, understanding, and practice.
  • Offering telehealth in all geographies where it is possible.
  • Occupying physical spaces with disability access and the ability to offer adaptations when needed.

Research

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

  • Recruitment of participants to The Ehlers-Danlos Society research opportunities, including the DICE Global Registry and Global Biobank
  • 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 CORE Member operations by:

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

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