News

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 central to NORD’s mission and history — community…

Gilead Sciences has suspended enrollment in two Phase 3 trials studying the effects of filgotinib, an anti-inflammatory therapy currently being investigated in several inflammatory conditions, in patients with ankylosing spondylitis (AS). The trials, SEALION2-NAÏVE (NCT04483700) and SEALION1-IR (NCT04483687), set out to determine if filgotinib is potentially…

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,”…

Treatment with Humira (adalimumab) increases work productivity, reduces sleep problems, and eases disease activity in people with ankylosing spondylitis (AS) and related diseases, a new real-world study indicates. The study, “Real-world evidence of the impact of adalimumab on work productivity and sleep measures in…

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…

A short interruption in in-person medical visits due to the COVID-19 pandemic significantly decreased treatment adherence but had little impact on disease activity in people with axial spondyloarthritis (axSpA), according to a real-life study in Switzerland. Notably, these parameters returned to pre-pandemic levels in the post-lockdown period. Similar trends…

People with ankylosing spondylitis (AS) often endure considerable psychological distress — including depression, anxiety, and stress — that is related to their experience of pain, a study shows. These findings highlight a need for more mental health resources for people with this disorder, the researchers said. 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…

Cosentyx (secukinumab) is a safe and effective treatment for ankylosing spondylitis (AS), producing similar results in Chinese patients compared to other populations, a Phase 3 study indicates. The study, “Secukinumab provided significant and sustained improvement in the signs and symptoms of ankylosing spondylitis,” was published…

Obesity is a risk factor for worse overall health in people with ankylosing spondylitis (AS), and is associated with increased inflammation, disease activity, and cardiovascular risk, a Taiwanese study has found. Therefore, preventing obesity in these patients is important to help improve their disease outcomes, researchers said. The…