News

Patients Interviews Highlight Need for Better Outcome Measures

New patient-reported outcome measures capable of adequately capturing and assessing the impact of cold agglutinin disease (CAD) symptoms are needed, a study reported. Its scientists hope that by identifying relevant patient-reported outcome measures, clinicians and others involved in managing patients’ care can gain a better understanding of the concerns…

Sutimlimab Suppressed CAD Response in Heart Surgery Patient

Suppressing the pro-inflammatory complement pathway using sutimlimab, in addition to other measures, can help prevent red blood cell destruction in patients with cold agglutinin disease (CAD) undergoing major surgery, a recent case report suggests The study, “Sutimlimab, an investigational C1s inhibitor, effectively prevents exacerbation of hemolytic anaemia…

CAD Played Role in Acute Liver Failure of Elder Woman

Cold agglutinin disease (CAD) in an elder woman worsened an underlying autoimmune condition that subsequently led to acute liver failure, a case study reports. This case highlights a need for informed understanding of CAD and its associations with other autoimmune processes, and how it can lead to early interventions…

Global Genes, Diversity Coalition Team Up to Advance Health Equity

Global Genes has partnered with the Rare Disease Diversity Coalition (RDDC) to advance health equity for rare disease patients and caregivers in underrepresented communities of color. “For rare disease patients, there are many challenges — and for people of color with a rare disease, these challenges are compounded…

Case Report: Warm AIHA Plus CAD Possibly Triggered by COVID-19

The virus that causes COVID-19, SARS-CoV-2, may have triggered both warm and cold autoimmune hemolytic anemia (AIHA) in a 51-year-old man, a case study reports. The case report, “Warm and Cold Autoimmune Hemolytic Anemia in the Setting of COVID-19 Disease,” was published in the journal Cureus. AIHA comprises a…

Rare Disease Diversity Coalition Awards $600K to Combat Disparities

The Rare Disease Diversity Coalition (RDDC) awarded $600,000 in grants to ease the disparities faced by rare disease patients of color. These Impact Rare Disease Solution grants will go five RDDC steering committee working groups, which aim to identify problems for rare disease communities and advocate for solutions. The five…

‘Rare’ Documentary in Kickstarter Campaign to Raise $45K by Oct. 28

A crowdfunding campaign aims to raise $45,000 to support “Rare,” a documentary film featuring the struggles and achievements of people living with rare diseases and their families. Sweis Entertainment and Digital Cave Media launched the campaign — allowing filmmakers to finish producing and to release the documentary — on Kickstarter.