News

Scores of virtual events are afoot around the world to mark Rare Disease Day 2021 on Feb. 28. The activities are focused on heightening awareness about rare diseases and the hundreds of millions of individuals they are thought to affect. Patients, caregivers, and advocates worldwide will sport denim ribbons…

People with axial spondyloarthritis (axSpA) who had higher pain sensitivity were more likely to have worse clinical outcomes, according to a study that found chronic pain to be common in these patients. The study, “Chronic pain and assessment of pain sensitivity in patients with axial spondyloarthritis: Results…

While progress was made last year on newborn screening and other policy issues critical to rare disease patients, a “State Report Card” argues that many concerns — notably out-of-pocket costs for prescription medicines and access to affordable comprehensive care — still need attention. Those were the findings of the…

AbbVie‘s Rinvoq (upadacitinib) has been approved in the European Union to treat active ankylosing spondylitis (AS) in adults who have responded inadequately to conventional therapy. The European Commission also approved Rinvoq to treat active psoriatic arthritis (PsA) in adults who have not responded to, or are…

The two COVID-19 vaccines that recently received emergency approval from the U.S. and other worldwide regulatory agencies are expected to pose little risk to the rare disease community, including to patients with compromised immune systems or those participating in gene therapy studies. That was the message of a recent…

Treatment with Humira (adalimumab) over six months significantly reduced symptoms and improved physical function, quality of life, and work productivity in ankylosing spondylitis (AS) patients, a Chinese study finds. The study, “…

Caring for a loved one with a rare disease, especially during these uncertain times, demands significant time, attention, patience, and dedication. To help meet that need, the National Organization for Rare Disorders (NORD)’s Rare Caregiver Respite Program may be a helpful resource. The program seeks to give a…

The U.S. Food and Drug Administration (FDA) has approved a generic version of Pfizer‘s Celebrex (celecoxib), an oral medication used to treat inflammation and pain caused by ankylosing spondylitis and other disorders. The new generic is made by the India-based company Unichem Laboratories, which announced the approval…

The National Organization for Rare Disorders (NORD) is seeking individuals willing to share real-life experiences with rare diseases to speak at its upcoming virtual Living Rare, Living Stronger NORD Patient and Family Forum. The interactive, patient-focused forum will be held online June 26-27. The deadline to apply for…

Targeting the calcium‐sensing receptor (CaSR), which plays a critical role in the development of bone cells, may be a therapeutic strategy to slow the progression of ankylosing spondylitis (AS), a study suggests. The study, “Aberrant upregulation of CaSR promotes pathological new bone formation in ankylosing spondylitis,” was published…