The Ehlers-Danlos Society launches vEDS ECHO

Posted October 25, 2019

The Ehlers-Danlos Society is delighted to launch the new vEDS ECHO: a program led by Dr. Sherene Shalhub dedicated to increasing awareness and education in all aspects of diagnosis and management of vascular Ehlers-Danlos syndrome (vEDS). 

VEDS ECHO is a revolutionary program that seeks to support health professionals around the world in caring for patients with vEDS. Friday, November 15, 2019 will see the launch of program, facilitated by Dr. Sherene Shalhub, vascular surgeon, translational researcher at the University of Washington, and Director of the Multidisciplinary Vascular Genetics Clinic at the University of Washington Medical Center.

“It is our goal to bridge the physical distances virtually to create a shared multidisciplinary space to care for patients with vascular Ehlers-Danlos syndrome,” said Dr. Shalhub.

Clinical experts will run a program that covers the main aspects of vEDS. Participants will be able to share their cases and questions in the sessions and will be guided to further educational materials and support. Continued Medical Education (CME) credits will be available at no charge to participants.

“The newly minted vEDS ECHO, within the EDS ECHO program, provides clinicians the opportunity to interact directly with other clinicians who have substantial experience in the care of people with vEDS. This is an important part of providing care to people with vEDS who live at some distance from centers of expertise and have to create care teams and work with local practitioners. One of the major objectives is to provide access to the experts that will carry over in to excellent local care and provide continuing access to practitioners who have assumed responsibility but lack the experience and thus comfort in providing care,” explained Dr. Peter Byers, medical geneticist and Professor of Pathology and Medicine at the University of Washington.  

“One of the massive unmet needs in the vEDS community is access to clinicians knowledgeable about this condition, especially in emergency situations where time is of the essence. Establishing a vEDS-specific ECHO program is a giant step forward in giving leaders in this field the opportunity to cast a wide geographic net in educating clinical teams who care for the unique needs of these patients,” confirmed Jennifer Tjernagel, Board of Directors of The Ehlers-Danlos Society.

Dr. Alan Hakim is Chief Medical Officer for The Ehlers-Danlos Society, and leads the Society’s ECHO project. He said, “I am delighted that the vEDS program is starting; it joins our steadily growing portfolio. Early in 2020 we aim to announce at least another three new programs that are currently in the planning stages, spreading our hubs to include the USA, Europe, and Australia. The long-term goal of all our ECHO programs is to expand across the world, creating multiple hubs in different regions in many languages and covering all time zones, removing the barriers for any healthcare professionals who want to learn about and share their knowledge of EDS and HSD.”

For full details, program dates and times, click here. 

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