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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

November 7, 2019November 7, 2019

Penn State Award Targets Doctors of Ehlers-Danlos Patients Without Specialty in This Rare Disease

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The Penn State Clinical and Translational Science Institute is funding seven new projects through its Bridges to Translation pilot grant program. One project aims to improve understanding of Ehlers-Danlos ... Read more

October 31, 2019October 31, 2019

Routine Heart Tests Not Needed for Hypermobile EDS Patients Unless Cardiac Problems in Family, Study Suggests

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Routine heart tests and echocardiography — a non-invasive test that uses sound waves to create moving pictures of the heart — may not be necessary for patients with hypermobile Ehlers-Danlos syndrome (hEDS) who have ... Read more

October 24, 2019October 24, 2019

No Increased Risk of Complications from Corrective Spinal Surgery in EDS Children, Study Suggests

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Surgery to correct spinal abnormalities does not appear to pose additional risks for bleeding or postoperative complications related to wound healing in children with Ehlers-Danlos syndrome (EDS), compared with ... Read more

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