The Ehlers-Danlos Society Launches its 2019 Global Learning Conference in Nashville, Tennessee

Posted July 31, 2019

The Ehlers-Danlos Society presents its Global Learning Conference in Nashville, July 30th-August 2nd.

The 2019 EDS Global Learning Conference features both local and international experts and brings together the world’s largest gathering of people with Ehlers-Danlos syndromes and hypermobility spectrum disorders, patients, families, caregivers, and health professionals for three days of education, advocacy, and support. We are also delighted to be holding a day dedicated to health professionals on Friday.

The 2019 Global Learning Conference in Nashville is bringing together over 800 patients and 130 medical professionals from all over the world. This year sees the largest amount of kids and teens with 40 attendees in total and 35 volunteers.

INTERNATIONAL EXPERTS PRESENTING ON THE LATEST MANAGEMENT, CARE, AND RESEARCH

This year welcomes new subjects and expert speakers, including our Keynote Speaker Dr. Daniel Clauw speaking on Fibromyalgia – an area of interest for our community. Dr. Chad Shepherd is joining us from the UK to speak on Living with EDS and PTSD and Trauma and other areas being covered are Bleeding and Bruising in EDS, Bone Fragility in EDS, Child Protection in EDS, Genetic Considerations in Having Children, and Red Flags in vEDS.

Friday’s Health Professionals Day opens with a Genetic Testing talk led by University of Arizona College of Medicine associate professor Dr. Christina Laukaitis, and closes with a Children and EDS talk led by clinical and clinical molecular geneticist Dr. Brad Tinkle.

Ultimately, patients and professionals will leave with as many answers as questions regarding these complex conditions and hope that there is a brighter future on the horizon for research and care, led by The Ehlers-Danlos Society.

FREE LIVE VIDEO STREAMING TO BRING THE CONFERENCE TO THOUSANDS GLOBALLY

We are excited to be able to guide patients to the most up-to-date information and resources from our Global Learning Conference, and bring together our communities globally via live-stream, with over 2,200 registered so far.

“For the first time, The Ehlers-Danlos Society is making it possible to watch this year’s Global Learning Conference via live-stream from anywhere in the world that you have an internet connection,” stated Lara Bloom. “We are working towards a time when geography and wealth no longer determine your quality of life, so we want to bring the benefits of conference to you – no matter where you are.”

Those viewing Stream One will be able to participate in question and answer segments of the stream through our official event app Whova.

The streams are being recorded and will be available after the conference on The Ehlers-Danlos Society’s website.

A NEW OFFICIAL EVENT APP TO BRING THE COMMUNITY CLOSER THAN EVER BEFORE

We are excited to announce that 2019 Global Learning Conference has a free, official event app on the Whova platform!

The app allows attendees to view the event agenda and plan a preferred schedule around presentations, but critically provides a space for networking and an opportunity to build lifelong friendships through their community feature.

GROUNDBREAKING HEDGE GENETICS RESEARCH SCREENING ON SITE

The Ehlers-Danlos Society is committed to finding the underlying genetic markers for hypermobile EDS (hEDS) through our worldwide research HEDGE study in which participants from the Global Registry allow researchers to compare and analyze patient data on a much larger scale than possible in individual research studies alone.

We are looking to screen 1000 individuals from around the world who have a diagnosis of hypermobile EDS, according to the most recent clinical criteria established in 2017. This is our fourth screening event of HEDGE so far, in which we hope to see over 100 patients, with further HEDGE screenings planned worldwide.

“With each screening event, we get closer to understanding hypermobile EDS with the goal of leading to improved care and treatment,” states Angela Ballard, the Clinical Research Coordinator at The Ehlers-Danlos Society.

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