EDS ECHO is tackling several key issues facing patients with the Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorder (HSD): supporting clinicians in increasing their knowledge; helping clinicians network with each other to discuss care; increasing access to care by increasing the number experienced clinicians, and supporting community advocates in raising awareness of EDS and HSD.
Too many in our community report that they are forced to travel far and wide and to wait very long periods of time to access doctors and allied health professionals who know how to manage the healthcare needs of people with EDS and HSD.
EDS ECHO covers all types of EDS, HSD, and associated symptoms and conditions, providing clinical case presentations, the latest management advice, and evidential research. We offer educational virtual programs free to participants, and we are committed to continuing to do so. We are working hard for world-wide awareness—and a better quality of life for all who suffer from these conditions.
The Ehlers-Danlos Society is proud and delighted to be celebrating one year of the EDS ECHO program, and we would like to thank each individual who has been part of this pioneering journey. Through the different programs in our portfolio we have already worked with 300 clinicians and community advocates from 20 nations; on track to fulfill our bold ambition to have 1000 colleagues in the EDS ECHO Alumni by 2021.
Since its inception, EDS ECHO has added several new programs to its portfolio. We run programs for clinicians that cover the breadth of EDS and HSD diagnosis and management; a vEDS ECHO dedicated to all aspects of diagnosis and management of vascular Ehlers-Danlos syndrome; an Allied Health Professionals ECHO that is run from 3 sectors around the world; and, we are looking forward in 2020 to introducing EDS ECHO programs dedicated to orthopedics, pediatrics, nursing, and physician assistants, and other rare types of EDS.
In addition, EDS ECHO is exploring opportunities for providing virtual one-off education meetings such as medical ‘Grand Rounds’, and clinician conferences.
May is EDS and HSD awareness month and we are aware of the challenges that the virtual world we are living in presents during this time. Now more than ever we need our community to help us raise awareness of these conditions. EDS ECHO is a virtual resource perfectly placed to support this.
Please help us by telling your healthcare team or healthcare colleagues about EDS ECHO and invite them to join this growing community that will change lives.
We are delighted to be now enrolling participants for EDS ECHO programs 4A and 4B which will commence this May. Clinicians can register today at ehlers-danlos.com/echo
Dr. Alan Hakim
Managing Lead, EDS ECHO
Chief Medical Officer, The Ehlers-Danlos Society
