Author Archives: Marisa Wexler MS

Mutations in the gene SLC39A13 cause a very rare type of Ehlers-Danlos syndrome (EDS) that is characterized by short stature starting in early childhood and distinctive facial features, a study reports. Its researchers suggest approaches that could be helpful in diagnosing this rare EDS form, including facial analysis and…

May is Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorder Awareness Month. This year, although in-person events have been canceled due to the COVID-19 pandemic, The Ehlers-Danlos Society is challenging the community to help raise awareness of Ehlers-Danlos syndrome (EDS) and hypermobility spectrum disorder (HSD) by posting…

The Office of New Drugs (OND) of the U.S. Food and Drug Administration (FDA) has denied an appeal from Acer Therapeutics regarding Edsivo (celiprolol), an investigational therapy for vascular Ehlers-Danlos syndrome (vEDS). Further clinical studies will be needed before the investigational therapy can be resubmitted…

The Ehlers-Danlos Society is accepting applications for its spring 2020 research grant program. Grants will support research in Ehlers-Danlos syndrome (EDS) and hypermobility spectrum disorders (HSD). Through its Spring 2020 Microgrants program, the society will award about nine grants of up to $5,000 each. These grants are generally…

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, a study has found. The findings may also have implications for designing exercise programs for people with hEDS. The study…

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…

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…

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…

A diagnosis of spontaneous renal artery dissection (SRAD) should be considered in Ehlers-Danlos syndrome (EDS) patients who experience sudden abdominal pain, a case report highlights. The report, “Spontaneous Renal Artery dissection in Ehler-Danlos Syndrome,” was published in the journal Kidney International Reports. Renal infarction is the…

The Ehlers-Danlos Society and Backpack Health have announced a partnership to provide patients with Ehlers-Danlos syndrome (EDS) and other related rare diseases with a digital management platform to better access their medical records and data. The platform will be accessible from mobile devices and the internet; it will also be…