The Ehlers-Danlos Society officially launches EDS ECHO, a Project ECHO initiative

The online educational and mentoring program connects Ehlers-Danlos syndrome (EDS) experts with clinicians around the world to improve patient care and outcomes.

The Ehlers-Danlos Society recently 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 (HSD). Monday, April 15th saw the launch of the US hub, facilitated by Dr. Clair Francomano at the National Institute on Aging in Baltimore, MD, with the UK hub kicking off on Tuesday, April 16th, with Dr. Alan Hakim at the Royal Society of Medicine, London.

Each hub hosts a 90-minute teleECHO clinic using Zoom, an online conference call platform. The program meets on a weekly basis and features educational presentations from an EDS/HSD expert, followed by case study presentations and discussion. Topics are covered on a 9-week rotation. Health professionals of any specialty, anywhere in the world, involved in the care of patients with EDS and HSD are welcome to join these free sessions and are encouraged to participate in the full nine-week rotation if possible.

“EDS ECHO seeks to tackle a key issue facing patients with EDS and HSD: lack of knowledgeable clinicians,” stated Lara Bloom, International Executive Director for The Ehlers-Danlos Society. “Too many in our community 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–some must wait over 2 years! Project ECHO can help us reach clinicians anywhere in the world, arming them with the tools and knowledge to care for their own patients with EDS and HSD.”

The Project ECHO model was developed by the University of New Mexico to help clinicians coordinate care for patients with hepatitis C in New Mexico. “ECHO” stands for Extension for Community Healthcare Outcomes, and the program emphasizes ‘moving knowledge, not patients’. There are currently 268 different Project ECHO programs in 34 countries. The University of New Mexico provides resources, training, and ongoing support for all Project ECHO programs. The Ehlers-Danlos Society’s ECHO initiative has the unique honor of being the very first worldwide program and will serve as a pilot program for future international Project ECHO efforts.

The long-term goal of EDS ECHO 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 clinician who wishes to join in and learn about diagnosis and treatment of the Ehlers-Danlos syndromes and hypermobility spectrum disorders.

“There simply aren’t enough medical professionals who know how to handle an EDS or HSD patient, and many of the clinicians who are knowledgeable are grouped together in just a handful of locations around the world,” stated Stacey Simmonds, ECHO Clinic Coordinator. “The Ehlers-Danlos Society and the EDS International Consortium have made a lot of progress in recent years, but we needed more EDS and HSD experts. With Project ECHO, we can train our own, no matter where they live.”

“We are so excited to see what comes out of the first round of our EDS ECHO program and share it with our community,” shared Angela Ballard, ECHO Clinic Coordinator, US. “The data tracking platform iECHO will help us see our impact and track things like our geographic reach. Our goal is to fill the map with EDS and HSD experts and to reach the day where geography does not determine quality of care.”

The first week was a huge success, welcoming 49 attendees between the two hubs. Both teams reported positive and enthusiastic responses.

“I am delighted to report that EDS ECHO is off to a great start,” reported Dr. Hakim. “We kicked off the first week with a presentation on diagnosing EDS and HSD followed by two de-identified case studies presented by Dr. Lisa Spina, an osteopath seeking new ideas for helping her patients. This led to a roundtable-style discussion where our experts and attendees asked questions and helped brainstorm. By the end of the session, Dr. Spina had a new understanding of the issues her patients were facing, as well as several new avenues of treatment to explore. We knew this was the sort of thing we could offer with Project ECHO, but to see it in practice was great.”

“Presenting my case histories was a fantastic learning opportunity,” added Dr. Spina. “It was great to hear how other healthcare practitioners would approach things. I’m at the beginning of my journey to manage patients with HSD/EDS and it is reassuring to be able to discuss issues with experts in the field.”

The US hub also started with two weeks of discussion on EDS and HSD diagnosis. The third week featured a presentation on musculoskeletal complications and pain management by Dr. Pradeep Chopra and the discussion of a case involving complex pain management in the setting of EDS. The discussion was wide-ranging and Dr. Chopra shared several “pearls” of clinical wisdom with the participants that should prove enormously useful.

Since the announcement of EDS ECHO, a number of groups and organizations have expressed enthusiasm for the program and the potential impact on patient care.

“As well as running the 9-week general program and talking with other sites about becoming hubs, we are currently exploring the possibility of running specific programs in areas such as vascular and orthopaedic surgery, paediatrics, and physical therapies, and also bespoke programs for hospital and community-based healthcare organizations,“ added Dr. Hakim. “The opportunities are vast and over the coming years. I truly hope we can build valued clinical networks all over the world.”

Learn more about EDS ECHO here
To get involved in future EDS ECHO sessions please contact echo@ehlers-danlos.com

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