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.