Marisa Wexler, MS, senior science writer —

The National Organization for Rare Disorders (NORD)’s RareLaunch training program will host two days of free virtual workshops in December, with the aim of empowering leaders to start non-profit organizations and research programs to help people with rare diseases.  “The RareLaunch program is…

A majority of rare disease patients using telehealth during the COVID-19 pandemic thought the experience positive, and many would like the option of continuing its use in future appointments, a series of surveys found. The surveys were conducted by the National Organization for Rare Disorders (NORD) and involved more than 800…

People with classical Ehlers-Danlos syndrome (EDS) appear to have less multi-organ involvement than those with other types, suggesting that the diagnostic criteria for this type of EDS may require an update, according to a recent study. The study, “Multisystemic manifestations in a cohort of 75 classical…

A new screening system will allow people with hypermobile Ehlers-Danlos syndrome (hEDS) to participate in the worldwide Hypermobile Ehlers-Danlos Genetic Evaluation (HEDGE) study without an in-person visit, the Ehlers-Danlos Society announced in a press release. The changes will help “to break down geographical barriers in research…

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…