News

The National Organization for Rare Disorders (NORD) has opened a financial assistance program for people in rare disease community who are affected by the COVID-19 pandemic in the U.S. Called the NORD COVID-19 Critical Relief Program, the effort will provide up to $1,000 annually to those eligible to…

Use of tumor necrosis factor alpha (TNF) inhibitors is linked to a higher risk of inflammatory disorders affecting the nervous system among people with ankylosing spondylitis (AS) and psoriatic arthritis (PsA), a long-term study based on nationwide data from Sweden and Denmark suggests. Specifically, the potential of greater…

Treatment with tumor necrosis factor inhibitors (TNFi) is not effective for many patients with ankylosing spondylitis (AS), causing them to switch therapies and leading to lower quality of life and less work productivity, a large international study reports.

First, the bad news: If you’re one of the 30 million or so Americans with a rare disease, you probably have lower immunity to the novel coronavirus than most people. Now, the good news: You already know how to face loneliness and adversity — qualities that make you far stronger…

The Committee for Medicinal Products for Human Use (CHMP) is recommending the approval of Cosentyx (secukinumab) for the treatment of adults with active non-radiographic axial spondyloarthritis (nr-axSpA). Recommendations from CHMP, part of the European Medicines Agency, are typically accepted by the European…

First, the bad news: If you’re one of the 30 million or so Americans with a rare disease, you probably have lower immunity to the novel coronavirus than most people. Now, the good news: You already know how to face loneliness and adversity — qualities that make you far stronger…

The Committee for Medicinal Products for Human Use (CHMP) has recommended the approval of Nepexto, a biosimilar of Enbrel (etanercept), for the treatment of various inflammatory disorders including ankylosing spondylitis. CHMP is an arm of the European Medicines Agency. and the European Commission generally accepts opinions released…

The Living Rare, Living Stronger Patient and Family Forum, originally set for May 14–16 in Cleveland, Ohio, has been postponed until July 18–20 because of the coronavirus disease COVID-19 pandemic. The event’s sponsor, the National Organization for Rare Disorders (NORD),…

Even with the coronavirus pandemic ravaging Europe and much of the world, patient advocate Lucia Monaco, PhD, of Italy remains confident that the Paris-based nonprofit she chairs will see the approval of 1,000 new rare disease therapies by 2027. That group, the International Rare Diseases Research Consortium (IRDiRC) —…

Worse sleep quality, higher disease activity, and a greater waist-to-hip ratio (WHR) predict fatigue among patients with ankylosing spondylitis (AS), a study in China found. Medical personnel should be more alert and use more effective approaches to ease fatigue symptoms in AS patients, the researchers…