"Conclusion: Ehlers-Danlos is a familial, transmissible pathology of connective tissue, resulting from defective protein synthesis. These alterations are responsible for numerous clinical manifestations (e.g., pain, joint disorders, fatigue, skin fragility, haemorrhages, digestive problems, ENT problems, respiratory problems, dysautonomia, dystonia, bladder and sphincter problems, oral and dental problems, and cognitive disturbances). In addition, it does not appear to be a rare disease; instead, it is actually frequent, despite the fact that many doctors are highly unfamiliar with it, thereby causing numerous iatrogenic complications. Physicians’ lack of knowledge about Ehlers-Danlos syndrome is the result of random and incomplete descriptions, which, fortunately, are beginning to be corrected in the international medical literature. Although it is known as a syndrome, it is in fact a disease whose diagnosis may be made with certainty on the basis of a set of clinical manifestations alone. Genetic tests are most often inconclusive as regards to the types of cases most often seen in clinical practice. Significant efforts have yet to be made on the international level, in order to build awareness to the disease and its treatments, and to help affected families who are all too often rejected and excluded. "
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Significant efforts at the international level are underway: the EDS International Symposium 2016 in New York City during May, 2016 (presented by EDS UK and the Ehlers-Danlos National Foundation, in alliance with the EDS consortium in Ghent and medical professionals internationally) has as a goal the reclassification of the diagnostic criteria for all the types of Ehlers-Danlos syndrome, and produce guidelines for medical professionals to use once a diagnosis has been reached as a universal guide for management. The updated criteria will be published in medical journals across the world.