Author Archives: Shayna Korol

The U.S. Food and Drug Administration (FDA) has cleared the start of a Phase 2 trial of izokibep in people with ankylosing spondylitis (AS), according to the therapy’s developers Affibody AB and Inmagene Biopharmaceuticals. “Obtaining FDA IND [investigational new drug] clearance is an important milestone for the izokibep…

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…

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…

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…

The U.S. Food and Drug Administration (FDA) has approved Hulio, a biosimilar of Humira (adalimumab), to treat chronic inflammatory disorders such as ankylosing spondylitis. However, Hulio (adalimumab-fkjp) — developed by Mylan and Fujifilm Kyowa Kirin Biologics — will not be available in the U.S. until July 31,…

The EveryLife Foundation for Rare Diseases has launched a nationwide National Burden of Rare Disease Survey to measure the full implications, economic and social, of living with rare disease in the United States. People with rare diseases know that the impacts of such conditions extend beyond just medical…

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…

Nepexto, a biosimilar to Enbrel (etanercept), has been approved by the European Commission to treat ankylosing spondylitis (AS) and several other inflammatory disorders. The therapy, co-developed by Mylan and Lupin, is expected to be available to patients in the European Union in the second…

The Black Women’s Health Imperative (BWHI) recently created a Rare Disease Diversity Coalition focused on reducing racial disparities in the rare disease community. Getting a timely and accurate diagnosis for a disease that few people — sometimes even physicians — have heard of is challenging on its own merit.

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…