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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

October 16, 2019October 16, 2019

Ehlers-Danlos Society Helps Launch Center at Indiana University Health to Advance Research, Patient Care

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The Ehlers-Danlos Society has helped to launch a center at Indiana University Health (IU Health) to advance research, education, and patient care in some of the least understood genetic ... Read more

October 9, 2019October 9, 2019

Connecticut Moves Closer to Approving Medical Marijuana for EDS

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A panel of physicians has voted in favor of adding Ehlers-Danlos syndrome (EDS) to the list of conditions that are eligible for treatment with medical marijuana in Connecticut. According ... Read more

October 2, 2019October 2, 2019

Genetic Testing is Critical to Accurately Diagnose Vascular EDS, Real-world Study Suggests

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Genetic testing is critical to get an accurate diagnosis of vascular Ehlers-Danlos syndrome (vEDS) as clinical criteria alone is insufficient, and given its overlap with other disorders, suggests a ... Read more

September 26, 2019September 26, 2019

NORD 2019 Rare Disease Summit Set for Oct. 21-22 in Washington, DC

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Next month’s annual conference of the National Organization for Rare Disorders (NORD) in Washington, D.C., couldn’t come at a better time, says Marshall Summar, MD, chairman of NORD’s board ... Read more

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