Published: 11/03/2020 Tags: The Ehlers-Danlos Society News

COVID-19: Child Protection Roundtable, April 27, 2020, Postponed until January 11, 2021

The Child Protection in EDS and HSD roundtable was due to take place on April 27, 2020, at The Royal Society of Medicine, London. The health and safety of our attendees must be considered a priority in light of the COVID-19 global outbreak, and we have therefore made the decision to postpone the roundtable event.  It will now take place on January 11, 2021. 

The Ehlers-Danlos Society has been hearing from a growing number of families and individuals sharing their experiences of being diagnosed with a factitious disorder, either imposing ill health on self or, more typically a parent on a child. People have spoken publicly at meetings and shared the most harrowing and heartbreaking stories that have had a profound effect on their social, professional, and emotional wellbeing.

We note that Ehlers-Danlos syndromes are being listed as a condition to be concerned about when looking for a factitious diagnosis. The Ehlers-Danlos Society would like to understand why this is happening, and what role the charities can do to support better understanding in our communities and among clinicians and social services.

We intend to start this process with a roundtable expert panel discussion at The Royal Society of Medicine, which will now take place on January 11, 2021, bringing together international senior clinicians and executive staff from other charitable organizations, senior clinicians in Pediatrics, Rheumatology, and Psychiatry, and representation from the Department of Health and Social Services.

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Our weekly, monthly, and quarterly virtual support groups for people from all over the world are a chance to come and share your story and chat with others for support.

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