News

The National Organization for Rare Disorders’ (NORD) “Living Rare, Living Stronger Patient and Family Forum” is back in person on June 26 for a day of learning and networking in Cleveland, Ohio. The event, which brings together the rare disease community, will take place at the InterContinental Cleveland Conference…

Genetic testing was used to identify predisposing gene mutations in a Korean woman with clinical signs of atypical hemolytic uremic syndrome (aHUS), according to a recent case report. “Patients with hereditary aHUS experience recurrent relapse even after complete recovery from the presenting episode, and about two-thirds of them progress…

The case of a woman who developed atypical hemolytic uremic syndrome (aHUS) during pregnancy was described in a recent report, which highlights the need to measure the levels of the ADAMTS13 enzyme to differentiate aHUS from similar conditions. The report, “A Case of Atypical Hemolytic Uremic…

Two infants developed atypical hemolytic uremic syndrome (aHUS) caused by mutations in the EXOSC3 gene and subsequent COVID-19 infections, as described in a recent case report. The cases, which are unusual in that they do not involve an imbalance of the immune system’s complement pathway, may offer insights into new…

A diagnosis of atypical hemolytic uremic syndrome (aHUS) was delayed in a woman with a history of advanced, but treated, cancer due to several confounding factors partly related to that cancer, according to a case report from the U.S. While the woman also had anemia and poor kidney function, two hallmarks…

A Russian military plane crash near Tetiana Zamorska’s home in Kyiv, Ukraine, was a sign that it was time for her and her family to leave. The treacherous, 34-hour pilgrimage that ultimately brought the group of eight by car to temporary accommodations in neighboring Poland last month was physically and emotionally difficult,…

Soliris (eculizumab) safely and effectively treated children with atypical hemolytic uremic syndrome (aHUS) in a real-world setting, according to a post-marketing surveillance study of pediatric patients in Japan. Notably, nearly three-quarters of the children experienced normalization of all blood parameters in a median of three weeks’ time, the…

A 30-year-old man is thought to have developed atypical hemolytic uremic syndrome (aHUS) after being vaccinated for influenza, as described in a recent case report. “Further studies may be needed to stratify such patients to weigh the risks and benefits of influenza vaccination,” its authors…

The European Commission is expected to propose a new governing framework for health data next month, called the European Health Data Space (EHDS), with the aim of connecting national health systems to facilitate secure and efficient transfer of data across systems in different European nations. The move is expected to…

Soliris (eculizumab) maintenance therapy administered every three weeks — instead of the biweekly standard regimen — was sufficient to normalize blood parameters and prevent disease recurrence for at least three years in a 4-year-old boy with atypical hemolytic uremic syndrome (aHUS), a case study reported. Individualized Soliris dosing was…