News

People with Ehlers-Danlos syndrome (EDS) have significantly greater stiffness of their blood arteries — a known risk factor for cardiovascular disease — than their healthy peers, a Swiss study shows. While vascular EDS (vEDS) was associated with the highest arterial stiffness among the different EDS types, these differences did not…

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 photo of a bespectacled young boy, his red baseball cap slightly askew as he  enjoys time outside, will be featured on the front cover of an upcoming calendar in the “Same But Different” contest to raise awareness about rare disorders. “A Lovely Day Out in Kew Gardens,”…

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…

More than half of patients with Ehlers–Danlos syndrome (EDS) and hypermobility spectrum disorder (HSD) use complementary alternative therapies to manage pain, according to the results of a survey. Opioids, physical therapy, and marijuana were rated by the participants as extremely helpful to manage chronic and severe pain. The study…

Same But Different, a nonprofit U.K. group that uses art for social change, is inviting people to choose their favorite photographs in a calendar contest to heighten awareness of rare diseases, including amyotrophic lateral sclerosis (ALS). The organization’s panel of judges has pared the number of contest submissions…

Treating comorbidities — or co-existing conditions — in people with Ehlers-Danlos syndrome (EDS) and hypermobility spectrum disorders (HSD) will be front and center at the virtual EDS ECHO Summit opening today. The online two-day event, hosted by the Ehlers-Danlos Society, will bring together some 200 specialists worldwide to…

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…

Pregnant women with Ehlers-Danlos syndrome (EDS) have a higher risk of experiencing a number of pregnancy and delivery complications, including premature births, placenta previa, and cervical insufficiency. than those without the disorders, a study reports. Given these findings, the researchers suggest that physicians should consider implementing…

Same But Different, a U.K. nonprofit that uses the arts to bring communities together, is holding a calendar photography competition to raise awareness for rare diseases. Under the theme “A Glimmer of Hope,” the competition is a means to “visually express the hope that exists for people affected by…