The National Organization for Rare Disorders (NORD) is applauding the Biden administration for announcing a rule to protect consumers from surprise medical billing, in a joint statement with 26 other U.S. patient organizations. The interim final rule will implement patient protections required by the No Surprises Act. Surprise…
News
People with cold agglutinin disease (CAD) use more healthcare resources than people without the disorder, both before and after a diagnosis, according to a recent Danish study. Study findings indicated that six months before a CAD diagnosis, patients were three times more likely to be admitted to a…
Accurately diagnosing cold agglutinin disease (CAD) and managing anemia without unnecessary blood transfusions are key patient care aspects of the disorder that should be considered by physicians, a recent case study highlighted. Not giving unneeded blood can help health care providers “avert … secondary injury caused by adverse reactions…
AllianceRx Walgreens Prime, a specialty and home delivery pharmacy, is partnering with TailorMed, a healthcare technology company, to help lower out-of-pocket prescription costs for specialty pharmacy patients. Medications attained through specialty pharmacies are those used to treat rare and chronic conditions in the U.S., and are often extremely costly. For…
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,…
Recent Posts
- Diagnosis of primary CAD difficult with standard criteria: Study
- A crack emerges, leading to more CAD care for this antique
- Attending church can be challenging for this CAD patient
- Cell therapy helps woman with rare combination of 3 diseases
- National ‘That Sucks’ Day reminds me of all this weary CAD warrior endures
- Chemotherapy triggers cold agglutinin disease in woman with breast cancer
- I am ready to cluck about CAD, ‘The sky is falling! The sky is falling!’
- Making a pattern in needlework prepared me for my CAD diagnosis
- Bacterial lung infection sparks CAD, kidney injury for woman
- How I’m like Mr. Spock: Cold logic and cold agglutinins