EDS Society Launches EDS ECHO Nurses Education Program

Inês Martins, PhD avatar

by Inês Martins, PhD |

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EDS ECHO nurses

On International Nurses Day (May 12) the The Ehlers-Danlos Society launched a new education and telementoring program especially for nurses who seek to improve their ability to care for people with Ehlers-Danlos syndrome (EDS) and hypermobility spectrum disorder (HSD), the society announced.

Part of the society’s EDS ECHO initiative (ECHO stands for Extension for Community Healthcare Outcomes), the online EDS ECHO Nurses program was launched in May, which is Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorder Awareness Month.

The program joins three other existing EDS programs for healthcare professionals and patients, including vEDS ECHO, which is dedicated to aspects of diagnosis and management of vascular EDSAllied Health Professionals ECHO for those specializing in rehabilitation aspects of the disease; and the EDS ECHO Advocacy program, which provides EDS and HSD patients with the necessary tools for effective advocacy initiatives.

Other programs expected later this year include ones dedicated to pediatric forms of EDS, rare types of EDS, and orthopedics.

EDS ECHO has started with two hubs, one at Indiana University Health, Indianapolis, and the other at the Royal Society of Medicine in London, U.K. These academic hubs include clinical experts with whom participants in EDS ECHO can share cases and questions throughout the programs’ sessions.

The goal is not that experts assume the care of patients via telemedicine. Rather, it aims to provide virtual mentoring and guidance to participants to improve their practice, and helps them become more independent, confident, and effective at caring for their patients.

The nurses program is meant for both community- and hospital-based nurses and will run once a month for six months, starting Aug. 6. Sessions, currently presented only in English, will take place on Thursdays at noon EST and will last approximately 90 minutes.

Throughout sessions, nurses will have access to expert speakers, discussions of practical issues, and cases from participants. The areas for discussion include features of EDS and HSD, how to manage patients, their pain and medications, caring for wounds, and pre- and post-operative care.

Participants also will be offered information about vascular issues, the use and advantages of braces, splints and orthotics, malfunction of the autonomic nervous system (dysautonomia), and how to educate patients and advocate for them.

Like other EDS ECHO programs, the nurses program is free and held virtually through Zoom videoconferencing, making it accessible to all nurses around the globe who are interested in attending.

Once signed up, participants are asked to attend a minimum of three of the six planned sessions, but they will have access to missed sessions via password-protected online recordings.

Each session earns its participants 1.5 continuing medical education (CME) credits at no charge. More information about the program and how to apply  is available here.