News

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 cord, a case study reports, highlighting the need for caution in performing nerve root blocks on EDS patients. The study appeared…

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. Disorder: The Rare Disease Film Festival strives to eventually host a film about every one of the nearly 7,000 rare…

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 syndromes among primary care doctors. The goal of the Bridges to Translation program is to fund research in fields…

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 no family history of heart problems, a small study reports. The study, “Utilization of echocardiography in Ehlers‐Danlos syndrome,”…

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 those without EDS having the same procedure, an analysis revealed.  The study, “…

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 diseases. Called The Ehlers-Danlos Society Center, it will provide comprehensive and multidisciplinary care for patients with Ehlers-Danlos syndrome…

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 to an Associated Press story, the vote took place Sept. 27 and the recommendation was officially accepted by Michelle Seagull, commissioner…

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 real-world study carried out at American and European institutions. The research also highlights the importance of getting a trained geneticist…

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 of directors. “The pace of discovery in rare diseases has gone from brisk to hypersonic,” Summar told Bionews Services, publisher…

Young people with hypermobile Ehlers-Danlos syndrome have a considerable number of physical symptoms that have a significant affect on their ability to participate in everyday activities and on their mental health, a study confirms. The findings of the study, “Symptom complaints and impact on functioning in youth with hypermobile…