The National Alliance for Caregiving, in partnership with Global Genes, has issued a free guidebook, available online, that offers resources and support for caregivers of children with rare diseases. “The Circle of Care Guidebook for Caregivers of Children With Rare and/or Serious Illnesses” was designed…
A young boy’s bright yellow tongue led doctors to a diagnosis of cold agglutinin disease (CAD), as described in a report of this rare case. The report, “An Icteric Tongue,” was published in The New England Journal of Medicine in the series Images in Clinical Medicine.
Registration is now open for Global Genes‘ 2021 RARE Patient Advocacy Summit. This year’s hybrid event will be livestreamed from California Sept. 27-29, and some seats also are available for attending the event in person in San Diego. “Here you’ll have the opportunity to connect and engage with others…
Registration is now open for the 2021 Rare Diseases and Orphan Products Breakthrough Summit, which will be held virtually Oct. 18–19. The event, also known as the National Organization for Rare Disorders (NORD) Summit, brings the rare disease community together to network and discuss developments in treatments and research…
An elderly man with cold agglutinin disease (CAD) and COVID-19 was successfully treated with plasma exchange therapy and folic acid supplements. This case highlights how plasma exchange therapy can be a rapid and temporary solution to manage and stabilize CAD, its scientists wrote. The case report, “…
More than 600 people participated in the 10th annual Rare Disease Week on Capitol Hill 2021, held virtually July 14–22, to advocate for the rare disease community. Hosted by the EveryLife Foundation’s Rare Disease Legislative Advocates (RDLA) program, the event brings together community members from across the U.S. to…
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…
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…
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