Wiley Donates Free Access to Groundbreaking Rare Disease Research Papers in Partnership with the Ehlers-Danlos SocietyPosted January 31, 2018
BALTIMORE, MD January 30, 2018 — In honor of The 2018 Ehlers-Danlos Syndromes Global Symposium, John Wiley & Sons, Inc. (NYSE: JW.A and JW.B), has donated free access to its groundbreaking compendium of peer-reviewed research papers, “The Ehlers-Danlos Syndromes: Reports from the International Consortium on the Ehlers-Danlos Syndromes,” a Special Issue of the American Journal of Medical Genetics Part C: Seminars in Medical Genetics” to the worldwide community of health care professionals, researchers, caregivers, and people living with Ehlers-Danlos.
The comprehensive 245-page supplement summarizes the pioneering efforts of The International Consortium on Ehlers-Danlos Syndromes & Related Disorders, the 2016 Ehlers-Danlos International Symposium, The Ehlers-Danlos Society, and the collaborative works of nearly 100 health professionals, researchers, and patient advocates.
“Since its March 2017 publication, the supplement has served as the foundation for tremendous strides in Ehlers-Danlos research, diagnosis, and patient care throughout the world,” states Lara Bloom, international director of The Ehlers-Danlos Society and steering committee member of the International Consortium.
“Free access through Wiley assures as many people as possible can read this important information wherever they reach it,” concludes Bloom.
Clair Francomano, MD, chair of The Ehlers-Danlos Society’s medical and scientific board, chair of the International Consortium’s classical committee, and director of Ehlers-Danlos Society Center for Clinical Care and Research at The Harvey Institute of Human Genetics of the Greater Baltimore Medical Center (GBMC), adds: “This is a breakthrough publication. Not only have we produced the first comprehensive nosology for the Ehlers-Danlos syndromes (EDS) in nearly two decades, this marks the first time an international consortium of leading authorities on EDS and related disorders have agreed on standardized management and care guidelines; and, even more importantly, the most comprehensive criteria for diagnosis ever produced for the entire spectrum of disorders.”
“The 2017 Classification represents the collaborative efforts of researchers, clinicians, and patient advocates, whose work addresses both advances in genomic research and the challenges posed by inconsistent diagnostic criteria,” states Bloom.
“Over the past two decades, two developments led to concerns that the 1998 EDS nosology needed substantial revision. First, the clinical and molecular characterization of several new EDS variants, which substantially broadened the molecular basis underlying EDS. Second, a growing concern, in the absence of genetic diagnosis, that the hypermobile type of EDS had an expanded phenotype, that it may be genetically heterogeneous, and thus, the previous diagnostic criteria for hypermobile EDS were inadequate,” states Francomano.
Shane Robinson, USA Executive Director of The Ehlers-Danlos Society notes: “Wiley’s generosity will allow The Ehlers-Danlos Society and the medical and patient community to spread further awareness of EDS and improve access to proper diagnosis, management, and care for millions people affected by Ehlers-Danlos and the myriad of related disorders. We are most grateful to the International Consortium for their courageous, intensive work and to Wiley for their continued support.”
Readers can access the supplement to read the articles online or download them as PDFs here:
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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, hypermobility spectrum disorders, and related conditions.
With offices in the US and the UK, we support collaborative research and education initiatives, awareness campaigns, advocacy, community-building, and care for the EDS and HSD population.
The Ehlers-Danlos Society seeks to grow world-wide awareness—and a better quality of life for all who suffer from these conditions. Research is at the center of what we do, so that one day we will have a cure.
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 are 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.
Life expectancy can be significantly shortened for those with the Vascular Ehlers-Danlos syndrome (vEDS) due to 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.
The hypermobility spectrum disorders (HSD) describe patients with symptomatic joint hypermobility not corresponding to other known conditions and syndromes. The spectrum of HSD ranges from secondary musculoskeletal manifestations, and a simplified categorization of genetic syndromes featuring joint hypermobility.
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