EDS ECHO – An Evolution in Medical Education and Care Delivery
The average time to diagnosis of an Ehlers-Danlos syndrome (EDS) or hypermobility spectrum disorder (HSD) is 10-12 years: for some, it can take decades. Early diagnosis is crucial to positive patient health.
As these conditions are multi-systemic, the problems often go unconnected for many years. Many in our community report being told their symptoms “are all in their head” or that they cannot possibly be experiencing the pain or other symptoms they say they are. Misdiagnosis is common, delaying treatment, or resulting in unnecessary surgeries or unsuitable treatments. Once diagnosed, there is often little or no follow-up care, and often at the point of diagnosis, patients are not given information on their condition, how to self-manage aspects of their care, adaptions that can be made to improve quality of life, or where to find support for a lifelong, chronic condition.
Too many report that they are forced to travel far and wide to access a physician who knows how to manage their healthcare, often at great personal expense, and often with incredibly long wait times of over three years. In some countries, there is no recognition of EDS or HSD, or very little knowledge or understanding of how to manage symptoms.
People have been turned away from Emergency Rooms or had treatment delayed due to misconceptions or lack of knowledge on the different types of EDS and HSD, and their associated conditions. This needs to change, and education is key.
Project ECHO® addresses population health in a scalable way — moving knowledge instead of people via telementoring and collaborative care with the philosophy of we can ‘all teach, and all learn’. In 2019 The Ehlers-Danlos Society launched EDS ECHO, a revolutionary program that seeks to support health professionals around the world in caring for patients with Ehlers-Danlos syndromes and hypermobility spectrum disorders. The first-ever rare diseases ECHO, EDS ECHO seeks to tackle a key issue facing patients with EDS and HSD: lack of knowledgeable clinicians. EDS ECHO is helping us reach clinicians all over the world, arming them with the tools and knowledge to care for their own patients with EDS and HSD.
EDS ECHO is a series of programs and courses for healthcare professionals across all disciplines who want to improve their ability to care for people with EDS, HSD, and associated symptoms and conditions. Enhancing care for people with all types of EDS and HSD through case-based discussions, sharing knowledge, and expert updates is at the heart of what we do. We also help local and regional groups to start a program for the care of their patients, expanding the EDS ECHO network, and bringing care closer to home.
EDS ECHO also runs programs on advocacy and for community leaders and educators, exploring ways participants can better teach and support those living with EDS or HSD. The Ehlers-Danlos Society is the first organization to have launched an ECHO program for a patient community.
Since its inception, EDS ECHO has added several new programs to its portfolio:
- Fundamentals of the Integral Movement Method (IMM)
- Allied Health Professionals
- Genetics and Genomics
- Vascular Ehlers-Danlos syndrome (vEDS)
- Community Leaders and Educators
Already, 1500 participants have joined EDS ECHO.
EDS ECHO Summits and Global Learning Conferences
We are proudly working to provide learning conferences each year for individuals, families, and caregivers affected by EDS and HSD, and the health providers that care for them.
The EDS ECHO Summits are twice-yearly, virtual events, that share the latest research and knowledge with community members and health professionals globally, through the traditional Project ECHO® all-teach, all-learn format, and are CME-accredited.
Our Global Learning Conference [GLC] is an annual hybrid event to bring together the community, providing opportunities to interact, find support, and learn management strategies and information from world-leading experts in EDS and HSD. We welcome community members, families, carers, and junior zebras aged 6-18 to join us in person, and offer a comprehensive virtual attendance option for people worldwide to attend from anywhere they have wifi. The GLC is CME-accredited.
The Ehlers-Danlos Society International Scientific Symposiums are triennial meetings to welcome clinicians, and basic and clinical researchers from around the world to examine the latest research, diagnostic criteria, pathways, and guidelines for management and care. The scientific meetings are for health professionals, are hybrid, and are CME-accredited.