News

The first wave of COVID-19 in Europe severely disrupted access to care and raised stress and anxiety in people with rare diseases, negatively affecting their health and well-being, according to a survey conducted by Eurordis-Rare Diseases Europe. “People living with rare diseases in Europe have found themselves caught as collateral…

Leaders in the U.S. rare disease community came together recently for a webinar to present helpful information on how to start a nonprofit and patient registry. They shared about how their respective organizations came to be, as well as the benefits of creating patient registries and how they can help…

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…