News

US Patient Groups Give Thumbs-Up to Rule Against Surprise Billing

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…

Case Report: Avoiding Unneeded Transfusions Key in Patient Care

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…

Partnership Aims to Lower Out-of-Pocket Costs for Rare Disease Meds

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 Open for 2022 Eurordis Black Pearl Awards

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…

COVID-19 Vaccine May Have Triggered CAD

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…

EveryLife Introduces First of Kind ‘Roadmap’ to ICD Codes

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…