News

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…

Treatment with Cosentyx (secukinumab) leads to sustained reductions in symptoms of active non-radiographic axial spondyloarthritis (nr-axSpA) over one year, according to the Phase 3 PREVENT trial.  These findings were the basis for Cosentyx’s recent approval…

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…

AbbVie has submitted an application to the U.S. Food and Drug Administration (FDA) requesting the approval of Rinvoq (upadacitinib) for the treatment of adults with active ankylosing spondylitis (AS). A separate application was submitted to the European Medicines Agency (EMA) by AbbVie earlier this year,…

Raremark, an online rare disease patient community, has launched a digital platform called Xperiome, aimed at streamlining the search for new medicines for rare disorders and incorporating more patient input into research. The goal is to help the pharmaceutical industry deliver innovative new therapies faster and smarter, the…