News

To help patient advocacy leaders and their partners better understand how global health statistics codes — known as ICD codes — are assigned, updated, and revised in the U.S. health information system, the EveryLife Foundation for Rare Diseases is presenting a first-of-its-kind resource guide. The foundation created the…

Those who wish to gain practical tools for living optimally with rare diseases are encouraged to attend the annual Living Rare Living Stronger Patient and Family Forum, hosted by the National Organization for Rare Disorders (NORD) and set this year for June 26-27. The conference brings together patients,…

COVID-19 appears to have triggered cold agglutinin disease (CAD) in a woman with thalassemia, an inherited bleeding disorder that affects red blood cells. Her case was complicated by the multiple immune antibodies — alloantibodies — she had built up in response to blood transfusions. Her case was described…

Eurordis opened a campaign, called Rare 2030 Action, that is seeking to establish a European action plan for rare diseases to ensure that none of the 30 million people in Europe living with rare diseases are left behind by the start of a new decade. As part of…

Ahead of this year’s Rare Disease Week on Capitol Hill, held virtually July 14–22, the EveryLife Foundation will award grants to top advocates of rare disease organizations who participate in the week’s pre-events. The top 50 point-earners will be eligible to win $1,000 to $5,000in  grants, totaling up…

The case of an 80-year-old man with cold agglutinin disease (CAD) who underwent abdominal surgery to remove his gallbladder was described in a recent report. Its investigators highlighted steps that can be taken to minimize the risk of CAD-related complications during surgery, such as increasing the temperature of the…

Researchers have reported for the first time a case of the autoimmune disorder antiphospholipid syndrome (APLS) in a woman who also developed cold agglutinin disease.  More studies are needed to explore the possible relationship between the two conditions, according to authors of the…

Progressive hemolytic anemia — the rupture and gradual depletion of red blood cells — caused by cold agglutinin disease (CAD) was triggered in a man with diabetes being treated at a hospital with intravenous fluids, according to a case report. The man was admitted to the hospital…

Sutimlimab continues to lessen the need for blood transfusions, prevent red blood cell destruction, ease fatigue, and limit inflammation in patients with primary cold agglutinin disease (CAD), according to data from two Phase 3 trials. These findings will be presented by Sanofi, the investigational therapy’s developer, at…

Symptoms of cold agglutinin disease (CAD) worsened for a 57-year-old woman two days after receiving the first dose of a COVID-19 vaccine, and again two days after the second dose, a case study from Spain reported. In both instances, prednisone’s use eased her symptoms and restored normal values…