People with ankylosis spondylitis (AS) may not be at an increased risk of developing severe symptoms of COVID-19, according to a large U.S. study. That’s not the case, however, with those with rheumatoid arthritis, another immune-mediated disease, who were found to have a 20% higher risk of developing severe…

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…

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 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…

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…

When the COVID-19 pandemic forced the postponement of a rare disease film festival originally slated for May, its organizers set out to find a new way to bring the films to an audience.  Co-founders Daniel DeFabio and Bo Bigelow, who are both fathers of children with…

The Alexion Charitable Foundation has awarded $1.1 million in grants to programs that support those with rare diseases during the COVID-19 pandemic, the organization recently announced. The grants will support activities that align with the foundation’s Rare Belonging focus, a set of funding priorities aimed at improving the…

Around 2,000 patients across the U.K. with ankylosing spondylitis (AS), psoriatic arthritis, or chronic pain conditions such as fibromyalgia will take part in a study aimed at understanding how the COVID-19 lockdowns may be impacting their health. The charity Versus Arthritis and the British Society for Rheumatology…

While the ongoing COVID-19 pandemic won’t have much of an impact on cash available for new biotech startups, it has begun to cause delays in the development of gene therapies to treat a variety of rare diseases. That’s the consensus of industry experts who spoke in a May 26 webinar…