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Rare diseases: New steps in EU collaboration to improve citizens’ lives

Published by EURODIS, 12th April 2017 In the face of current Euroscepticism, the area of rare diseases is one that proves cross-border, European collaboration is essential to improve the lives of EU citizens. European collaboration on rare diseases results in policies that bring high added value to patients and their families, and in turn has […]
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Shira Strongin: A Voice For Those With Rare Diseases

Published in University of Virginia Healthy Balance, 04/25/2017 Sporting turquoise hair and her own unique style, Shira Strongin is a vibrant and creative teenage girl. She grew up singing and dancing, and was actively involved in musical theater. In her pre-teen years, she suffered a dance injury that would ultimately change her life. Her parents took her to […]
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New masterclass in London for healthcare professionals!

Masterclass: Advancing Practice in Hypermobility The masterclass includes presentations and workshops led by a team of national and internationally recognised specialists and researchers, including members of the International Consortium. Medical, health and exercise professionals who wish to gain further knowledge and advance their clinical practice in assessing and management of children and adults with hypermobility […]
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Orthostatic Intolerance and Postural Orthostatic Tachycardia Syndrome in Joint Hypermobility Syndrome/Ehlers-Danlos Syndrome, Hypermobility Type: Neurovegetative Dysregulation or Autonomic Failure?

Published by BioMed Research International, 2/12/2017 Joint hypermobility syndrome/Ehlers-Danlos syndrome, hypermobility type (JHS/EDS-HT), is a hereditary connective tissue disorder mainly characterized by generalized joint hypermobility, skin texture abnormalities, and visceral and vascular dysfunctions, also comprising symptoms of autonomic dysfunction. This study aims to further evaluate cardiovascular autonomic involvement in JHS/EDS-HT by a battery of functional […]
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Modern Medicine’s most neglected disorder receives much needed attention

  Published in UCC Express, 3/30/2017 New updated guidelines for the diagnosis, managements and care of patients with the Ehlers-Danlos syndromes have been published for the first time in 20 years. A recently formed international consortium of over 90 experts in the field of the Ehlers-Danlos syndromes published their research in the American Journal of […]
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