News

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…

Treatment with Cosentyx (secukinumab) reduced fatigue for up to three years in people with active ankylosing spondylitis (AS), particularly those who had never received TNF inhibitors, according to two Phase 3 clinical trials. Age and…

Among people with non-radiographic axial spondyloarthritis (nr-axSpA) — a type of arthritis that mainly affects the joints of the spine — women tend to have more severe disease than men do, as well as a poorer response to treatment, a Swiss study indicates. This finding may have implications…

AbbVie’s Rinvoq (upadacitinib) has been recommended for approval in the European Union as a treatment for active ankylosing spondylitis (AS) in adults. The Committee for Medicinal Products for Human Use (CHMP), an arm of the European Medicines Agency, also supports Rinvoq’s approval to treat adults with active psoriatic…

The U.S. Food and Drug Administration (FDA) and the European Medicines Agency (EMA) have accepted and agreed to review applications seeking approval of AVT02, a Humira (adalimumab) biosimilar candidate. The FDA is expected to make a decision in September 2021,…

To empower and equip members of the rare disease community to engage state leaders in matters of importance to patients and their families, the National Organization for Rare Disorders (NORD) has launched an initiative across the U.S. Its goal is to establish a Rare Disease Advisory Council (RDAC)…

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…