Neurological Issues in Spotlight at Upcoming EDS ECHO Summit Event

Teresa Carvalho, MS avatar

by Teresa Carvalho, MS |

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EDS Echo | Ehlers-Danlos News | Illustration of man speaking at podium

The Ehlers-Danlos Society is set to host an online event Sept. 25–26 spotlighting neurological complications in Ehlers-Danlos syndrome (EDS) and hypermobility spectrum disorders.

The initiative is part of the group’s EDS ECHO Summit Series, held for the first time last year as a virtual scientific conference for health and social care practitioners. Patients, families, and caregivers will be able to apply for scholarships for the event this year.

Started in 2003, Project ECHO (ECHO stands for Extension for Community Healthcare Outcomes) connects providers in underserved communities with experts at regional, national, and global centers for long-term telementoring, collaboration, and case-based learning. Currently, programs run in dozens of countries.

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As part of this project, the online educational and mentoring program called EDS ECHO gathers clinicians across multiple medical specialties to improve patient care and outcomes.

EDS ECHO started with two hubs, one at Indiana University Health, Indianapolis, and the other at the Royal Society of Medicine in London, U.K. Its aim is to provide virtual mentoring and support to participants so they can improve their practice, and become more autonomous, confident, and successful at caring for their patients.

To that end, the Ehlers-Danlos Society has planned a set of virtual events, including the EDS ECHO Summit Series, for this year to convene experts, patients, families, and caregivers.

The first day of each summit series event is usually dedicated to healthcare professionals. Patients, families, and caregivers can join on the second day, dubbed community day, also suitable for healthcare professionals who wish to learn from a lay perspective.

The community day on Sept. 26 will include topics such as how to manage headaches, joint instability in the neck and lower back pain, symptoms of tethered cord — where the spinal cord is attached to tissue around the spinal column, limiting its movement — and knowing when surgery is needed.

Healthcare professionals may earn a total of 12 continuing medical education credits for attending both days live.

Agenda details and registration links are available on the society’s website. The conference will take place via Zoom Webinar. A ticket for community day is $50, while a package that includes access to all five community events this year is $220.

The application deadline is Sept. 5 for the limited number of community day scholarships, which allow access to all events in the series and to previous recordings.

Scheduled for Dec. 4–5, the Allergies and Immunology Complications conference will be the last series event of the year. The full agenda will be announced soon. Any questions may be sent by email to [email protected].