EDS ECHO SUMMIT: A Virtual Scientific Conference on EDS, HSD, and Comorbidities
October 2-3, 2020
The Ehlers-Danlos Society is delighted to announce its first EDS ECHO Summit; a virtual scientific conference for health and social care practitioners. This scientific meeting will explore the most up to date knowledge of, and research into the association, causation, and management of comorbidities seen in the Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD).
Child Protection Pediatric Roundtable
January 11, 2021
Royal Society of Medicine, London, United Kingdom
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. 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, London, January 11, 2021.
We will be bringing together senior clinicians and executive staff from The Ehlers-Danlos Society, Ehlers-Danlos Support UK, HMSA, other charitable organizations, senior clinicians in Pediatrics, Rheumatology, and Psychiatry, and representation from the Department of Health and Social Services. The purpose of the meeting is to share experiences, and to identify collaborative ways forward and priorities in research.
The Ehlers-Danlos Society European Learning Conference
Health Professionals Day, April 24, 2021 • Community Day, April 25, 2021
Leading experts will present the latest management and scientific information about the Ehlers-Danlos syndromes, hypermobility spectrum disorders, and associated symptoms and conditions.
April 24, 2021, is Health Professionals Day. Sessions will be presented in English, and translated into Spanish, French, German, Dutch, and Italian.
April 25, 2021, is Community Day. This conference is for those who have EDS and HSD, and their families. Sessions will be presented in English, and translated into Spanish, French, German, Dutch, and Italian.
Register and learn more here.
The Ehlers-Danlos Society Global Learning Conference
August 5-7, 2021
Join us for our 2021 Global Learning Conference in Scottsdale, Arizona, USA. Leading experts will present the latest research, management, and scientific information in the Ehlers-Danlos syndromes, hypermobility spectrum disorders, and related conditions.
August 5-7 are Community Days: our conference for individuals living with EDS and HSD, and their families, including a track for Junior Zebras, ages 6–17.
August 6 is Health Professionals Day, a conference day running concurrently, for Health Professionals only.
Registration and learn more on the conference webpage.
Vascular Ehlers-Danlos Syndrome (VEDS) Summer Camp
July 30–August 1, 2021
Join us for our first vascular Ehlers-Danlos syndrome (vEDS) family weekend, partnering with Camp Joy in Cincinnati, Ohio, USA!
We hope to see the biggest gathering of the vEDS community in the world, with educational presentations from world-leading vEDS specialists, and we will have a packed program of safe and fun activities for all ages and capabilities.
The Ehlers-Danlos Society has secured a grant to fund those in the community with a “pay what you can afford” program. Register and learn more here.
Classical Ehlers-Danlos Syndrome (cEDS) Conference
November 13-14, 2021
Houston, Texas, USA
We are delighted to announce that we will be holding a conference focusing on classical Ehlers-Danlos syndrome (cEDS), at Baylor Medical Center in Houston, November 13-14, 2021.
The conference will involve expert speakers from all over the world, presenting the latest in research, clinical care, and management in cEDS.
Saturday, November 13, 2021, is health professionals’ day.
Sunday, November 14, 2021, is a day for individuals with cEDS and their families.
Details coming soon on how to register.
Issues with My Tissues Screenings and Q&A
Location and Dates – Various
Join Lara Bloom, President and CEO of The Ehlers-Danlos Society, on a special screening tour of “Issues With My Tissues”. These events are free and open to the public.
“Issues with my Tissues” follows Lara’s journey as she trains to become the first known person with EDS to walk the London Marathon in 2011 at the age of 31, despite having barely walked more than three miles at a time before in her life. This moving, informative documentary features interviews with medical professionals, families with EDS, and individuals who have suffered from misdiagnosis.
Lara will answer questions about how she manages her day to day symptoms, how things have changed since the documentary, and the work of The Ehlers-Danlos Society. Lara will give her personal tips and tricks on how to have as many good days as you can whilst living with EDS, HSD, and a myriad of related symptoms and associated conditions.