News

The burden of disease among people with primary cold agglutinin disease (CAD) remains high multiple years after diagnosis, illustrating the unmet needs of these patients, new data from a large U.S. Electronic Health Record (EHR) database shows. The data were shared in a presentation, titled “Longitudinal…

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…

COVID-19 can be associated with the development of cold agglutinin disease (CAD), leading to the need for blood transfusions. But the autoantibodies resulting from CAD may interfere with blood typing analyses needed for such transfusions, a case report found. The report, “Serological Blood Group Discrepancy and Cold…

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…

Using multiple warming measures, hypothermia was prevented in an adult man with severe cold agglutinin disease (CAD) undergoing surgery, a recent case study reports. According to the investigators, the report is the first to describe the success of a combination of…

Off-label treatment with Imbruvica (ibrutinib), a lymphoma and leukemia therapy, can reduce the anemia and peripheral symptoms of cold agglutinin disease (CAD), a preliminary study has found. The study, “Effective Treatment of Cold Agglutinin Disease/Cold…

Use of the investigational therapy sutimlimab results in substantial reductions in patient hospitalizations and blood transfusions among adults with primary cold agglutinin disease (CAD), a post hoc analysis of the CARDINAL trial found. The results of the analysis point…

Cold agglutinin disease (CAD) disease negatively affects a variety of aspects of daily living, with patients often experiencing fatigue, according to new research. In a separate study, it was found that CAD patients appear to be at an increased risk of anxiety or depression. Researchers from Sanofi…

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…