Participation in clinical trials exposes rare disease patients to financial, physical, and emotional pressures, according to the results of a patient focus group series. “Rare disease trial participants are running an endurance race they are highly motivated to complete, but these incremental burdens negatively impact their ability or willingness to…
News
SARS-CoV-2, the virus that causes COVID-19, may trigger cold agglutinin disease (CAD) in children, a case report suggests. The report, “Autoimmune hemolytic anemia in children with COVID-19,” was published in the journal Pediatric Blood & Cancer. Autoimmune hemolytic anemia (AIHA), an autoimmune disease characterized by…
The National Organization for Rare Disorders, known as NORD, was named an official charity partner of the 2021 TCS New York City Marathon, which will be held Nov. 7 both in-person and online. “Supporting charitable causes and organizations are a long-standing tradition of the TCS New York City…
Cold agglutinin disease (CAD) and not the cancer therapy Keytruda (pembrolizumab) was found to be the cause of anemia in a 64-year-old man with lung cancer, according to a recent case report. The patient’s CAD arose as a result of another type of cancer — a lymphoma —…
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…
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