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January 16, 2020January 16, 2020

Smaller Bone Size May Explain Greater Risk of Fractures in EDS Patients, Study Finds

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Women with hypermobile Ehlers-Danlos syndrome have a smaller cortical bone — the outer part of the bone, essential for its resistance and strength — and for that reason are ... Read more

January 2, 2020January 2, 2020

Prevalence of EDS and HSD in UK is Significantly Higher Than Previously Thought, Study Says

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The rare disease status of Ehlers-Danlos syndrome (EDS) and hypermobility spectrum disorder (HSD) should be re-evaluated, as both conditions seem to be more prevalent than previously thought, a U.K. study ... Read more

December 19, 2019December 19, 2019

Atypical Headaches Can Be Initial Symptom of Vascular EDS, Case Report Suggests

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Atypical headaches on one side of the head, caused by tearing of the walls of the carotid artery — the artery that supplies oxygenated blood to the brain — ... Read more

December 12, 2019December 12, 2019

Newly Identified Mutation in TNXB Gene Linked to Classical-like Ehlers-Danlos in Case Report

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A newly identified mutation in the TNXB gene, which leads to the loss of the Tenascin X protein, is associated with the development of classical-like Ehlers-Danlos syndromes (EDS), a ... Read more

December 10, 2019December 10, 2019

Gene Therapy Takes Center Stage at 2019 NORD Summit

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With so much recent publicity surrounding gene therapy, it’s no surprise that the topic was a major focus of the recent 2019 NORD Rare Diseases & Orphan Products Breakthrough ... Read more

December 6, 2019December 6, 2019

HHS Secretary Alex Azar Touts White House Efforts to Cure Rare Diseases

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Despite skyrocketing healthcare costs, President Trump is committed to protecting the 30 million or so Americans with rare diseases and ensuring timely, affordable access to lifesaving treatments, the nation’s ... Read more

December 5, 2019December 5, 2019

Ehlers-Danlos Society Receives Anonymous $1M Gift for Research

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The Ehlers-Danlos Society has received an anonymous gift of $1 million to advance research in Ehlers-Danlos syndromes (EDS), hypermobility spectrum disorders (HSD), and related medical conditions. The generous gift has enabled ... Read more

November 21, 2019November 21, 2019

Study Finds Shoulder Abnormalities in People with Hypermobile EDS

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People with hypermobile Ehlers-Danlos syndrome (hEDS) have larger spaces in the shoulder joint than those without the condition, and this anatomical difference may help to explain their shoulder pain, ... Read more

November 14, 2019November 14, 2019

Nerve Root Blocks May Pose Risk of CSF ‘Leaks’ in EDS Patients, Case Study Warns

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A person with Ehlers-Danlos syndrome (EDS), during the course of a routine nerve root block procedure, developed a ‘leak’ of the fluid that normally surrounds the brain and spinal ... Read more

November 13, 2019

Rare Disease Film Festival Highlights Patient and Researcher Unity

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Rare disease-themed videos glowed on a large screen before an audience of people in wheelchairs, with crutches, and bearing oxygen tanks this Nov. 9 and 10 in San Francisco. ... Read more

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