Published: 10/07/2020 Tags: The Ehlers-Danlos Society News

The Ehlers-Danlos Society is delighted to host its first-ever Virtual Summer Conference, July 10-12, 2020

The 2020 Global Learning Conference was due to take place in Scottsdale, Arizona, USA, however, due to the COVID-19 global pandemic, the conference was postponed until 2021, and adapted to become a 2020 virtual event. The three-day Virtual Summer Conference will see presentations for the Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD) communities, and their families and caregivers, with July 10 dedicated to the rarer types of Ehlers-Danlos syndromes. 

The Virtual Summer Conference is bringing together over 1300 individuals from the EDS and HSD community from all around the world, with over 40 medical professionals and leading experts presenting the latest research and management information. 

Members of the EDS and HSD communities, from all around the world, will take part in Community Voices talking about life with different subtypes of the Ehlers-Danlos syndromes, and hypermobility spectrum disorders. Jon Corn, one of only 15 people diagnosed with dermatosparaxis Ehlers-Danlos syndrome (dEDS), will talk about his experiences of living with a rare disease. 



This year welcomes new expert speakers, and presentations covering EDS, HSD, and associated symptoms and conditions. 

Professor of Urogynaecology, Vik Khullar, will be joining the event from the UK to speak on ‘Disorders of Bladder Function’. Professor Khullar has a long-standing interest in uterovaginal prolapse and urinary dysfunction in women with EDS, and will present the latest research and clinical findings. Dr. Ines Kapferer-Seebacher, a specialist in periodontics and rare diseases with dental phenotype, presents from Austria on the dental complications which can occur in EDS and HSD. Neurodiversity, and Autism, EDS and HSD, are introductions to further new topics to the 2020 program.

July 10 and July 12 will close with an ‘Ask the Specialists’ session, where a number of leading experts will come together for a live Question and Answer session, taking questions from conference attendees. 



The Ehlers-Danlos Society is delighted to be able to make the latest research, management, and scientific information more globally accessible, and bring together its communities from around the world with live translation services throughout the event. For the first time, each presentation and question and answer session will be available in five languages in real-time, with attendees choosing an audio track in the language of their preference. 

All conference attendees will be able to submit their questions for the Q&A sessions in their chosen language, which will be translated for the speakers and answered live. The presentations are being recorded and will be available in all five languages on The Ehlers-Danlos Society’s website and YouTube channel, as part of its commitment to breaking down barriers to information and care.



Miss America, Camille Schrier, will host a special 30-minute Question and Answer session, answering questions submitted by the EDS and HSD community. ⁠Through 2020 Camille, who lives with Ehlers-Danlos syndrome, will use the Miss America national recognition to promote her own social impact initiative, Mind Your Meds: Drug Safety and Abuse Prevention from Pediatrics to Geriatrics. 



The 2020 Virtual Summer Conference has a free, official event app on the Whova platform, 

allowing attendees to view the event agenda and plan a preferred schedule around presentations, ask questions to panelists, and take part in exciting new event additions such as Zebras Got Talent. The app critically provides a space for networking and an opportunity to access information and pose questions, through their community feature.

Many members of the EDS and HSD communities are unable to attend in-person events, due to health challenges, disability, financial and distance challenges. By making the conference virtual, The Ehlers-Danlos Society hopes to connect more members of its community than ever before, providing vital information, research, and support to improve quality of life and access to care. 

Virtual Support Groups

Let’s Chat

Would you like to speak to others living with EDS and HSD but can’t get to any support group meetings, events, or conferences?

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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