Ehlers-Danlos Society Plans Online Events for 2021

Teresa Carvalho, MS avatar

by Teresa Carvalho, MS |

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Ehlers-Danlos Society virtual events

The Ehlers-Danlos Society is planning a series of virtual events that start in January and are intended to gather experts, people with Ehlers-Danlos syndrome (EDS) and hypermobility spectrum disorders (HSD), their families and caregivers.

As inclusive events, organizations and the general public also are invited to join.

The first event of 2021 will take place Jan. 10 and will address the impact of misdiagnosing EDS and HSD in children.

According in information on the Society’s website, an increasing number of EDS patients are being misdiagnosed with a factitious disease, a mental disorder in which someone deceives others by looking sick, getting sick on purpose, or by self-harm. This first session will facilitate better understanding of this issue and reveal what kind of multidisciplinary work can be done to prevent it.

A roundtable discussion that melds opinions from clinicians, patients’ associations and government health and social services representatives will take place.

Delays in care, neglect, child abuse, and the impact on physical and mental health will be some of the other topics discussed in the session. Those interested in attending can check the agenda and sign up for free here.

Pain management will be the topic discussed in the next session, April 24–25, as part of EDS ECHO Summit Series.

The first day of each ECHO Series’ event usually is dedicated to health professionals. Patients, families and caregivers will have the opportunity to join and share their experiences in the second day. To do so, one has to send an email to [email protected]

The next summit series will be held May 29 and will be dedicated to updated research on the rarer types of EDS. It will be a single-day session for both health professionals and patient communities.

The Virtual Summer Conference will take place June 26–27. The sessions will be focused on the up-to-date research, management, and scientific information on EDS, HSD and related conditions.

July 30–31 is set aside to address vascular EDS (vEDS) and comorbidities (co-existing conditions) for the next session in the ECHO series.

The next part of the series will take place Sept. 25–26 and will be focused on neurological complications stemming from EDS and HSD.

Allergies and immunology complications will be the themes addressed in the last part of the ECHO series, Nov. 20–21.

The full virtual event schedule is available here.

The initiative provides two types of registration: one for patients and another for health professionals. Additionally, for the first time, patients are able to purchase all events as a package, a less-expensive option comparatively with the cost of acquiring them separately.

The face-to-face conferences in Paris, France, and Scottsdale, Arizona, U.S. planned for 2021 were canceled to ensure the safety of all participants. However, the Society believes that since the events can be accomplished virtually and translations to several languages will be made available, more people may be reached worldwide. Translations will be available for some events, including Arabic, French, German, Spanish, Italian, Portuguese, Japanese, Mandarin, and Hindi.

In 2022, the Society plans to host its Global Learning Conference in the U.S., and a scientific symposium in Rome, Italy. In 2023, conferences will take place in France, Australia, Sweden, South America, New Zealand, and Singapore, among others.