The Ehlers-Danlos Society Centers and Networks of Excellence Program

Global Centers and Networks of Excellence Vision: Multi-Disciplinary Team Care Around the World

The Ehlers-Danlos Society is committed to increasing the availability of clinical services for people living with EDS and HSD, decreasing the diagnostic odyssey, and standardizing communication and care for those impacted by EDS and HSD.

Toward that end, our aim is to develop a network of Excellence for EDS and HSD around the globe. This will be a first step toward the goal of developing a network of Centers that will assist thousands of people worldwide, and alleviate their pain and symptoms.

“We know that around the world, what is desperately needed is early diagnosis, validation, and effective multidisciplinary care. We look forward to making this a reality. Our aim is that no matter where you live, you have access to a multidisciplinary team approach,” explained Lara Bloom, President, and CEO for The Ehlers-Danlos Society.

Building a bridge between hope and reality

“We set a goal to learn about how multidisciplinary clinics work around the world, to enable us to use the gathered information as a guideline for developing the EDS and HSD Centers of Excellence,” described Dr. Clair Francomano, Professor, Medical and Molecular Genetics, Indiana University School of Medicine. “Although only a small number of multidisciplinary clinics exist for EDS and HSD worldwide, we were fortunate to collect invaluable qualitative data from prominent physicians and clinics in Australia, Belgium, Canada, France, Germany, Japan, Sweden, Switzerland, the United Kingdom, and the United States of America.” Alongside the in-person clinic services, we will encourage telehealth services, which have proved to be essential during the COVID-19 global pandemic and have shown the opportunity to significantly increase access to care.

“We want to think past bricks and mortar. We know that in each country and region, centers may look different based on the resources and clinical set-up, and we want this framework to function for all,” detailed Lara Bloom.

The Ehlers-Danlos Society’s Centers and Networks of Excellence (CNE) program will ensure critical standards of care with each center required to meet clinical, research, professional education, and patient care criteria. Geographical, financial, and cultural considerations will advance the highest standards of care to improve the lives of people living with EDS, HSD, and related conditions worldwide.

“We want the goal to be long-term care, for both the physical and the psychological aspects of living with these conditions. Both are essential to ensure that people living with EDS and HSD are offered the best chance at a good quality of life that everyone so richly deserves. We know that is more than diagnosis and tests, it’s the language used, it’s the tone. It’s about someone feeling believed and validated.” said Lara Bloom, President, and CEO, The Ehlers-Danlos Society.

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]