Nominations are now open for the worldwide 2022 Black Pearl Awards from Eurordis-Rare Diseases Europe. The 12 award categories recognize individual advocates, policy makers, researchers, organizations, and companies who work to make a difference for the global rare disease community. The deadline for nominations is Sept. 10…
Vaccination for SARS-CoV-2, the virus that causes COVID-19, might have triggered cold agglutinin disease (CAD) in a 45-year-old woman, a case from Saudi Arabia reports. Her symptoms appeared three days after receiving the first dose of the Pfizer-BioNTech COVID-19 vaccine. According to the study, the patient achieved complete remission…
Frostbite with cold agglutinin disease (CAD) in an elderly woman in France led to the patient’s death after an amputation failed to resolve the condition, a case study reported. This case highlights the importance of early identification and treatment of CAD to improve patient outcomes in the presence of…
At its first virtual investor event, biotech company Centogene set a bold mission: to cure 100 rare diseases within the next decade. A leader in the field of genetic diagnostics, Centogene used the June 22 event to present its strategic priorities, outlining its plans to speed the discovery…
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…
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