News

Long-term maintenance treatment with sutimlimab is safe, prevents red blood cell destruction, and increases the amount of hemoglobin in people with cold agglutinin disease (CAD), avoiding the need for blood transfusions. Those findings are detailed in the study “Inhibition of complement C1s in patients with cold…

Emotional resilience is a term used to describe how people respond to changes and their ability to adapt to stressful situations. Being resilient doesn’t mean that people don’t experience or feel the stress but it refers to how quickly they can “bounce back” or adapt to crises. Resilience can…

Cold agglutinin disease can lead to serious complications during pregnancy, according to a case study of two women with autoimmune hemolytic anemia (AIHA). The study’s researchers emphasized the importance of a complete molecular diagnosis of AIHA to estimate maternal and fetal risks, and to establish…

The number of treatments for children with rare diseases has grown over the past decade, according to a new study. However, despite the increase, nearly 7,000 rare diseases are still lacking treatment. And federal incentives to boost treatment development for these rare diseases have primarily focused not on creating new…

In recognition of Rare Disease Day Feb. 29, Bionews Services launched a social media campaign last month asking patients to describe what makes them rare. Running Feb. 7–29, the #WhatMakesMeRare campaign was aimed at uplifting people with rare diseases by encouraging them to share their stories and perspectives. The…

Beginning on Feb. 29, Rare Disease Day, chapters from notable scientific books and clinical review articles covering rare disorders will be available free-of-charge from Elsevier. The offer runs through April 30, and aims to supports work by researchers and clinicians into a better understanding of and treatments for rare diseases, as well…

Starting a 501(c)(3) tax-exempt nonprofit isn’t easy, but the National Organization for Rare Disorders gave a few tips for those  looking to begin the complex process in its Feb. 20 webinar.  William Whitman…

The rare case of a man infected with the hepatitis E virus who developed autoimmune hemolytic anemia was described in a study that also highlighted the potential for underdiagnosing autoimmune complications in such infections. The study, “Unusual Presentation of Hepatitis E with Autoimmune Hemolytic Anemia – A Case Report,”…

An abundance of events are afoot around the world to mark Rare Disease Day 2020 on Feb. 29. The activities are focused on heightening awareness about rare diseases and the hundreds of millions of individuals they are thought to affect. Patients, caregivers, and advocates worldwide will sport denim ribbons…

Autoimmune hemolytic anemia (AIHA) experts gathered in Vienna, Austria, in November 2017 for the First International Consensus Meeting with the goal of summarizing current research into diagnosis and treatment of the rare genetic disorders. Now, after three subsequent meetings at medical conferences, the researchers and physicians have published their conclusions and…