News

Raremark, an online rare disease patient community, has launched a digital platform called Xperiome, aimed at streamlining the search for new medicines for rare disorders and incorporating more patient input into research. The goal is to help the pharmaceutical industry deliver innovative new therapies faster and smarter, the…

The EveryLife Foundation for Rare Diseases has launched a scholarship fund in the U.S. to support individuals with rare disorders who are pursuing personal goals through training and education. The initial phase of the five-year, $1-million #RAREis Scholarship Fund will include 32 scholarships — each totaling $5,000 —…

When the COVID-19 pandemic forced the postponement of a rare disease film festival originally slated for May, its organizers set out to find a new way to bring the films to an audience.  Co-founders Daniel DeFabio and Bo Bigelow, who are both fathers of children with…

Coronavirus disease 2019 (COVID-19) could cause cold agglutinin disease (CAD), a case report of two patients from France suggests. The cases were described in a letter to the editor of the journal Annals of Hematology. The letter, submitted by researchers from the University…

Daratumumab, a therapy used to treat myeloma patients, effectively eased painful and disabling symptoms in a man with cold agglutinin disease (CAD) who failed to respond to rituximab, a case report showed. If this therapeutic response is confirmed in other patients, daratumumab — sold by…

Japanese patients with cold agglutinin disease (CAD) are almost three times more likely to develop blood clots compared with people without this autoimmune disorder, a study reports. These findings are in agreement with the results for non-Asian populations, according to the researchers. The study, “Demographic characteristics, thromboembolism…

A case report from Michigan suggests that coronavirus disease 2019 (COVID-19) could cause cold agglutinin disease (CAD). Results showed that appropriate treatment, including folic acid and a steroid, lowered inflammation and nearly corrected levels of blood cells. The report, “Cold agglutinin disease and autoimmune hemolytic…

The EveryLife Foundation for Rare Diseases has launched a nationwide National Burden of Rare Disease Survey to measure the full implications, economic and social, of living with rare disease in the United States. People with rare diseases know that the impacts of such conditions extend beyond just medical…

Researchers found a wide range of demographic, clinical, and laboratory characteristics when studying eight patients with cold agglutinin disease (CAD). The findings revealed that treatment with corticosteroids, surgical removal of the spleen, and the use of CellCept (mycophenolate mofetil) — an antirejection medicine given to transplant patients…

The prevalence of cold agglutinin disease (CAD) is four times higher in colder climates than in warmer areas, according to a study from Europe. The findings also showed that a combination of rituximab with bendamustine is a safe and effective therapy for people with CAD. The study,…