People with rare disorders have a worse healthcare experience than those affected by chronic diseases, according to the results of an international survey conducted by Eurordis-Rare Diseases Europe. Indeed, rare disease patients overall give their healthcare experience a medium-low rating, of 2.5 on a scale of 1 to 5,…
A type of protein modification called glycosylation is associated with higher levels of disease-causing antibodies in cold agglutinin disease (CAD), new research suggests. The findings highlight the role that antibody modifications play in antibody-driven diseases like CAD, researchers said. The study, “In from the cold: M‐protein…
Scores of virtual events are afoot around the world to mark Rare Disease Day 2021 on Feb. 28. The activities are focused on heightening awareness about rare diseases and the hundreds of millions of individuals they are thought to affect. Patients, caregivers, and advocates worldwide will sport denim ribbons…
Researchers have reported a very rare case of cold agglutinin disease (CAD) associated with urothelial carcinoma, the most common type of bladder cancer, in an 86-year-old man. The acquired autoimmune disease has been associated with blood cancers, but cases of CAD secondary to solid tumors are rare. This case report…
While progress was made last year on newborn screening and other policy issues critical to rare disease patients, a “State Report Card” argues that many concerns — notably out-of-pocket costs for prescription medicines and access to affordable comprehensive care — still need attention. Those were the findings of the…
Cold agglutinin disease (CAD) seems to play a small part in the development of anemia among people who have enlarged spleens due to malaria infection, a study from Rwanda suggested. The study found a “minor role of cold agglutinin in anemia” among these patients.
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…
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…
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