The Ehlers-Danlos Society Hosts Its First EDS ECHO Summit: A Virtual Scientific Meeting on EDS, HSD, and Comorbidities

The Ehlers-Danlos Society is delighted to be hosting its first virtual EDS ECHO Summit: A Virtual Scientific Meeting on EDS, HSD, and Comorbidities on October 2-3, 2020, sharing the latest research and knowledge with health professionals globally, through the traditional Project ECHO® all-teach all-learn format.

“The EDS ECHO Summit was created to run inbetween our in-person International Symposiums that take place every three years. It is important to ensure a global scientific conversation takes place each year, and at a time when virtual connections are stronger than ever, now is the perfect time to launch this new effort,” stated Lara Bloom, President and CEO of The Ehlers-Danlos Society.

The Project ECHO framework seeks to address population health in a scalable way — moving knowledge instead of patients via telementoring and collaborative care. The ECHO model is not “telemedicine” where specialists assume the care of the patient; it is a guided model aimed at practice improvement, in which providers retain responsibility for patients, and gain increasing independence as skills, confidence, and self-efficacy grow.

The 2020 EDS ECHO Summit will explore the most up-to-date knowledge of, and research into, the association, causation, and management of comorbidities seen in the Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD). 

The two-day virtual event will see over 200 medical professionals from around the world hear 23 guest expert and abstract presentations, along with abstract posters, from various disciplines including: ear, nose, and throat; neurodiversity, urological complications; gastrointestinal disorders; and respiratory concerns. Project ECHO® designates this live activity for a maximum of 14.5 AMA PRA Category 1 Credits™. Physicians can claim the credit commensurate with the extent of their participation in the activity.

A focus on improving the quality of life is a sentiment that will be echoed throughout the speakers’ presentations, with the importance of a multidisciplinary team approach. Similarly, many speakers will touch on the importance of treating each person individually, and with respect of their health journey thus far; Dr Alan Hakim, convenor of the Summit and lead for the Society’s ECHO programs, states, “There is no doubt that people with EDS and HSD can have complex sets of comorbid concerns that negatively impact their physical and mental health and quality of life. They will present in primary/community care, and secondary/hospital care, and potentially to many different specialties depending on the nature of the concerns. Their assessment first requires that clinicians recognize that these concerns are real and co-exist; and that care requires a coordinated, multidisciplinary approach.”


Ehlers-Danlos syndromes (EDS) are a group of disorders that affect the body’s connective tissues including the skin, joints, blood vessels, gut, and many other organs and tissues. These disorders arise because of abnormal production and function of collagen and allied connective tissue proteins. EDS affects more than one in 5000 people, regardless of age, gender, or race. It is a chronic, life-long condition.

The signs and symptoms of EDS are many, and vary between the different types. Signs and symptoms include fragile skin with poor healing, bruising and bleeding, and abnormal scarring; ease of joint injury, widespread joint pain, dislocations, low muscle tone, and muscle contractures; abnormal musculoskeletal structure such as kyphoscoliosis, hip dysplasia, and short stature; changes in eye structure such as thinning of the cornea; abnormalities of the teeth and gums; and, in some of the rare types, life-threatening complications such as heart valve disease, rupture of organs, and aneurysm formation and rupture of major blood vessels. 

Hypermobility spectrum disorder (HSD) is diagnosed when the musculoskeletal complications of joint hypermobility and joint instability (e.g. ease of injury, joint pain, and dislocations) arise in a person who does not have the defining features of an underlying syndrome such as EDS or other heritable disorders of connective tissue.

In addition, several related disorders are observed in a number of people with EDS and with HSD. These add complexity to the presentation of their condition and its management. Such related disorders for example functional bowel disorders; autonomic dysfunction; severe chronic fatigue; neurological concerns including cord and nerve entrapment and sensory neuropathy; immune hypersensitivity; anxiety disorders and depression; and ADHD. 


The Ehlers-Danlos Society is a global community of patients, caregivers, health care professionals, and supporters, dedicated to saving and improving the lives of those affected by the Ehlers-Danlos syndromes.

Headquartered in NYC, The Ehlers-Danlos Society is a registered 501c3 nonprofit organization in the United States and a registered charity in the United Kingdom. The Ehlers-Danlos Society proudly works to provide global learning conferences, collaborative research and education initiatives, awareness campaigns, advocacy, community-building, and care for the EDS and HSD population.

Source: The Ehlers-Danlos Society


Categories: Medicine and Healthcare

Tags: echo, ehlers danlos syndromes, health professionals, healthcare, hypermobility spectrum disorders, medical professionals, virtual

Additional Links

About The Ehlers-Danlos Society

View Website or Media Room

The Ehlers-Danlos Society is a global community of patients, caregivers, health care professionals, and supporters, dedicated to saving and improving the lives of those affected by the Ehlers-Danlos syndromes.