News

Global Genes and RARE-X, two nonprofit organizations dedicated to improving the lives of people with rare diseases like cold agglutinin disease (CAD), announced they are joining forces, with the merger expected to close by the end of this year. “What was apparent to all of us was how closely…

Although extremely rare, there have been cases of cold agglutinin disease (CAD) and related conditions following vaccination against COVID-19, a recent review study reported. While it’s difficult to draw firm conclusions about cause and effect, scientists say developing CAD may be a very rare side effect from COVID-19 vaccines.

The rare disease patient advocacy organization Global Genes, along with the Rare Disease Diversity Coalition (RDDC), has launched the next phase of its partnership to advance health equity for people with rare conditions, such as cold agglutinin disease (CAD). The initiative Know Your Family History is focusing on the…

VV-ECMO, a technique used to deliver oxygen to the body when the lungs are not working properly, can be used in people with cold agglutinin disease (CAD) without notable complications, a case report shows. The report, “Veno-venous extra-corporeal membrane oxygenation in a COVID-19 patient with cold-agglutinin haemolytic anaemia:…

A committee of the European Medicines Agency has recommended Enjaymo (sutimlimab-jome) be approved for hemolytic anemia, or anemia due to the destruction of red blood cells, in adults with cold agglutinin disease (CAD). The positive opinion from the agency’s Committee for Medicinal Products for Human Use now will…

Global Genes announced the winners of its RARE Champions of Hope awards, recognizing leaders and organizations for their work driving advocacy and innovation in rare diseases, such as cold agglutinin disease (CAD). As part of the 2022 RARE Disease Patient Advocacy Summit, held Sept. 12–14 in San Diego,…

Enjaymo (sutimlimab-jome) eased anemia, and reduced fatigue and the need for blood transfusions and other treatments in people with cold agglutinin disease (CAD) who hadn’t received blood transfusions recently, final results from the Phase 3 CADENZA trial show. Results were detailed in the study, “Sutimlimab in patients…

Either a hot water bath or a blood warmer attached to an infusion pump may be used to warm up blood donated from patients with cold agglutinin disease (CAD) in order to minimize the risk of agglutination, or blood cell clumping, in a subsequent stem cell transplant, a study…

Enjaymo (sutimlimab-jome) led to clinically relevant reductions in fatigue and improvements in quality of life in adults with primary cold agglutinin disease (CAD), according to additional six-month data from Part A of the Phase 3 CARDINAL trial. These benefits in several patient-reported outcomes add to previously reported data…

Fatigue is one of the most common symptoms of cold agglutinin disease (CAD), affecting 90% of patients, a U.S. survey found. Nearly half of people with the rare autoimmune disorder who responded to the survey, on the disease burden imposed by CAD, reported experiencing fatigue on a daily basis.