The National Organization for Rare Disorders’ (NORD) “Living Rare, Living Stronger Patient and Family Forum” is back in person on June 26 for a day of learning and networking in Cleveland, Ohio. The event, which brings together the rare disease community, will take place at the InterContinental Cleveland Conference…
News
An elderly woman in Japan is the first reported patient in Asia to develop cold agglutinin disease (CAD) due to COVID-19, according to a new case study. The patient was found to have anemia, or an unusually low red blood cell count, that was not resolved with a blood…
A 71-year-old woman with primary cold agglutinin disease (CAD) was successfully treated with the glucocorticoid prednisone, a case study reported. Its scientists noted that primary CAD typically does not respond to glucocorticoids, but in particular instances like this case, it can. The study, “A Case of Idiopathic Cold…
The case of a man with cold agglutinin disease (CAD) that was found to be secondary to a blood cancer, called diffuse large B-cell lymphoma (DLBCL), was described in a recent report. The researcher proposes that DLBCL should be considered as a potential diagnosis in people with unexplained CAD.
Treatment with Soliris (eculizumab) eased the symptoms of cold agglutinin disease (CAD) in a man in France who possibly developed the condition as a result of a severe infection with SARS-CoV-2, the virus that causes COVID-19, a case study reports. While the patient ultimately died, the researchers said the study’s findings…
The case of a man with cold agglutinin disease (CAD) co-occurring with a blood cell disorder called myelodysplastic syndrome was described in a recent report from India. The report, “Cold autoimmune hemolytic anemia with myelodysplastic syndrome: Not just an ‘Open and Shut case,” was published in…
A Russian military plane crash near Tetiana Zamorska’s home in Kyiv, Ukraine, was a sign that it was time for her and her family to leave. The treacherous, 34-hour pilgrimage that ultimately brought the group of eight by car to temporary accommodations in neighboring Poland last month was physically and emotionally difficult,…
The European Commission is expected to propose a new governing framework for health data next month, called the European Health Data Space (EHDS), with the aim of connecting national health systems to facilitate secure and efficient transfer of data across systems in different European nations. The move is expected to…
The National Organization for Rare Disorders (NORD) has updated its State Report Card to make it more digitally friendly and added telehealth to its categories of rare disease policy issues in a nod to its increased use during the ongoing COVID-19 pandemic. NORD’s report card project began seven…
Mortality rates are generally higher among people with cold agglutinin disease (CAD) and related conditions than in the general population, according to a recent study from Denmark. These results highlight the need for better care for people with CAD, its authors noted. The study, “Survival in…
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