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Press Release

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

NASHVILLE, Tenn. - July 31, 2019 - (Newswire.com)

​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.

ABOUT THE EHLERS-DANLOS SYNDROMES AND HYPERMOBILITY SPECTRUM DISORDERS

The Ehlers-Danlos syndromes (EDS) are a group of 13 heritable connective tissue gene disorders that produce a spectrum of complex problems across multiple systems of the body. The physical characteristics that are common to all types of EDS include hypermobile joints, skin hyperextensibility, and tissue fragility. EDS is known to affect more than one in 5,000 men and women of every race and ethnicity.

Each person’s case of Ehlers-Danlos syndrome is unique. Severity may range dramatically, even within families. Prognosis depends on the type of Ehlers-Danlos syndrome and the individual.

HYPERMOBILE EHLERS-DANLOS SYNDROME (hEDS)

Hypermobile EDS (hEDS) typically begins with extreme joint hypermobility, joints which can stretch beyond normal limits; a propensity for sprains, strains, subluxations and dislocations; pain, often in lower limbs, and with fine motor or repetitive tasks; and easy fatigability.

Although each person with hEDS faces their own set of problems out of the wide range of possible effects, hEDS generally evolves. The initial “hypermobility” phase may involve the ability to hyperextend various body parts to extremes normally attributed to contortionists, gymnasts or elite dancers. Over time, the extreme hypermobility and connective tissue instability of hypermobile EDS may lead to permanent injuries. The “pain” phase involves widespread and worsening pain and headache; pelvic pain in women; and worsened fatigue. The “stiffness” phase seen in some adults and in the elderly results in general reduction in joint hypermobility; significant losses in functionality because of disabling pain and fatigue; and increased limitations, due to reduced muscle mass and weakness, prior injuries and arthritis.

While certain features of hypermobile EDS are not yet in the diagnostic criteria — as more research is needed to prove causation and the relationships between the hEDS and potential comorbidities — clinical descriptions of hEDS have expanded beyond joint hypermobility to include: chronic pain and fatigue, gastrointestinal disorders, neurological issues, dysautonomia, and anxiety. As of this time, hypermobile EDS has no identified distinctive cause.

HYPERMOBILITY SPECTRUM DISORDERS (HSD)

The hypermobility spectrum disorders (HSD) describe patients with symptomatic joint hypermobility not corresponding to other known conditions. The spectrum of HSD ranges from secondary musculoskeletal manifestations and a simplified categorization of genetic syndromes featuring joint hypermobility.

VASCULAR EHLERS-DANLOS SYNDROME (vEDS)

Life expectancy can be significantly shortened for those with the Vascular Ehlers-Danlos syndrome (vEDS) due to the potential for organ and/or blood vessel rupture. While significantly diminished life expectancy is not usually a factor in the other types, quality of life can be severely affected by chronic pain, disability, and myriad comorbidities. There are no cures for the Ehlers-Danlos syndromes, but there are treatments which address many symptoms and preventative measures that may help slow their progression.

ABOUT THE EHLERS-DANLOS SOCIETY

The Ehlers-Danlos Society is a global community of patients, caregivers, health care professionals, and supporters, dedicated to saving and improving the lives of those affected by the Ehlers-Danlos syndromes. 

Headquartered in Baltimore, MD, The Ehlers-Danlos Society is a registered 501c3 nonprofit organization in the United States and a registered charity in the United Kingdom.

The Ehlers-Danlos Society staff team has now grown to 18 members of staff across the world, proudly working to provide global learning conferences, collaborative research and education initiatives, awareness campaigns, advocacy, community-building, and care for the EDS and HSD population.


Related Links
The Ehlers-Danlos Society



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Original Source: The Ehlers-Danlos Society Launches Its 2019 Global Learning Conference in Nashville, Tennessee
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