Published: 16/09/2021 Tags: The Ehlers-Danlos Society News

The Ehlers-Danlos Society announces Center of Excellence Program

Early diagnosis is crucial to positive patient health, but after diagnosis, there is often little or no follow-up care. When diagnosed, patients are often not given any information about their condition, offered supportive self-management for aspects of their care, adaptions that can be made to improve quality of life, or informed about where to find support for a chronic, lifelong condition.

Global Centers of Excellence Vision: Multi-Disciplinary Team Care

The Ehlers-Danlos Society is committed to increasing the availability of clinical services for people living with EDS and HSD. Toward that end, our aim is to develop a network of Centers of Excellence for EDS and HSD around the globe.

An Ehlers-Danlos Society Center of Excellence will provide the best care possible by offering a specialized, multidisciplinary team of health care specialists in pain, dysautonomia, physical medicine and rehabilitation, gastroenterology, urogynecology, neurology, neurosurgery, allied health professionals, mental health professionals, and others who are up to date on the latest EDS and HSD therapies, research, treatments, and medications.

The Center of Excellence (COE) program will be a first step toward the goal of developing a network of Centers that will assist thousands of people worldwide, reduce wait times, alleviate their pain and symptoms, and educate not only other physicians but those impacted by the conditions and their relatives, through both in-person and virtual collaborations.

Clinics around the globe

Our plan is for the COE program to be launched by August 2022. Our aim is to support ten centers initially, and we are looking for donations to support this exciting initiative and make it a reality.

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

Learn more about the Center of Excellence Program here.

Virtual Support Groups

Let’s Chat

Would you like to speak to others living with EDS and HSD but can’t get to any support group meetings, events, or conferences?

Our weekly, monthly, and quarterly virtual support groups for people from all over the world are a chance to come and share your story and chat with others for support.

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