Patricia Inácio, PhD,  science writer—

Treatment with Soliris (eculizumab) may be discontinued with close monitoring in people with atypical hemolytic uremic syndrome (aHUS) whose disease is in remission for at least six months — providing their kidney function remains stable — or in those who have developed end-stage kidney disease, a small study…

Soliris (eculizumab) was shown to effectively treat atypical hemolytic uremic syndrome (aHUS) triggered by COVID-19 in a patient who had undergone a heart transplant five years earlier, according to a recent case report study. “We present a case of [a] 32-year-old Hispanic male with a history of heart…

Infection with SARS-CoV-2, the virus that causes COVID-19, may trigger first clinical symptoms or relapse of atypical hemolytic uremic syndrome (aHUS) in people carrying mutations in complement genes, a case report suggests. The report, “Atypical HUS triggered by infection with SARS-CoV2,” was published in the journal…

Family members of people with atypical hemolytic uremic syndrome (aHUS) who carry mutations in complement genes may be at a lower risk of developing this disease than previously reported, according to an Italian study. The single-center study estimated the risk to be at 20% — much lower than the 50%…

A 6-month-old girl who was diagnosed with cystic fibrosis (CF) went into kidney failure due to atypical hemolytic uremic syndrome (aHUS), according to scientists who worked on her case report. Her kidney function was completely restored following hemodialysis, plasma exchange therapy — a form of treatment that replaces…

Ahead of this year’s Rare Disease Week on Capitol Hill, held virtually July 14–22, the EveryLife Foundation will award grants to top advocates of rare disease organizations who participate in the week’s pre-events. The top 50 point-earners will be eligible to win $1,000 to $5,000in  grants, totaling up…

Treatment with Soliris (eculizumab) successfully prevented the recurrence of atypical hemolytic uremic syndrome (aHUS) in a 64-year-old woman who had received a kidney transplant, without compromising her recovery from COVID-19, a case study reports. The study, “COVID-19 in a kidney transplant recipient treated with eculizumab for…

Adults with atypical hemolytic uremic syndrome (aHUS) continue to show improvements in kidney function, blood parameters, and quality of life after receiving Ultomiris (ravulizumab) for a median of 1.5 years, new analysis of clinical trial data suggests. The findings were reported in the study “Long-Term Efficacy and…

More than half of the people with rare diseases and their caregivers, asked in a survey, were undecided or less than willing to be vaccinated for COVID-19 if a vaccine was approved under emergency use authorization instead of the routine process, the EveryLife Foundation for Rare Disease reports. These findings…

The EveryLife Foundation for Rare Diseases is accepting applications for a scholarship program that aims to help adults with a rare disease pursue personal goals through training and education. For a second year, the #RAREis Scholarship Fund — supported by Horizon Therapeutics – will award 35 one-time scholarships, each…