News

Eurordis, a Paris-based coalition of national rare disease associations across Europe, hosted its first all-virtual conference, bringing some 1,500 delegates from 57 countries together online during the COVID-19 pandemic. The 10th European Conference on Rare Diseases & Orphan Products (ECRD2020) — which was set for May 14–15 in…

Commercially insured patients with cold agglutinin disease (CAD) in the U.S. use healthcare resources — hospital admissions, outpatient and emergency room visits, and blood transfusions — more frequently than a matched group of patients without the disease, a large real-world study reports. This utilization was also greater before diagnosis,…

The Rare Diseases Clinical Research Network (RDCRN) has opened an online survey to better understand how the COVID-19 outbreak is affecting people with rare diseases, their families, and caregivers. Survey questions cover a patient’s physical and mental health, supply of treatments, and access to healthcare, among other…

The autoantibodies found in people with cold agglutinin disease (CAD) carry high levels of sugar molecules, which may help distinguish them from those with related disorders, a study has found. The study, ““Glycosylation of Immunoglobulin Light Chains is Highly Prevalent in Cold Agglutinin Disease,” was published in…

FFF Enterprises and Bionews announced today that both rare and orphan disease advocates are joining forces to provide patients with resources to help them connect as a community and continue to manage their health during this time when many are finding themselves alone. Recognized as the nation’s leading supplier of…

Treatment with rituximab is safe and effective in managing autoimmune hemolytic anemia (AIHA), and seems to be more beneficial for people with warm antibody autoimmune hemolytic anemia (wAIHA) than for those with cold agglutinin disease (CAD), a review study has found. These findings indicate…

While there are few silver linings to the cloud created by COVID-19, the pandemic that has killed tens of thousands, hobbled economies worldwide and drove millions to quarantine in their homes, one may be a new appreciation of telemedicine. “If something good could come out of this crisis, it’s that…

The National Organization for Rare Disorders (NORD) has opened a financial assistance program for people in rare disease community who are affected by the COVID-19 pandemic in the U.S. Called the NORD COVID-19 Critical Relief Program, the effort will provide up to $1,000 annually to those eligible to…

Heart surgery can be performed safely in people with cold agglutinin disease (CAD) by adopting a series of procedure adjustments, according to a case study. The study, “Cardiopulmonary bypass strategy in a patient with cold agglutinin of high thermal amplitude,” was published in the journal…

First, the bad news: If you’re one of the 30 million or so Americans with a rare disease, you probably have lower immunity to the novel coronavirus than most people. Now, the good news: You already know how to face loneliness and adversity — qualities that make you far stronger…