News

Organizations Rally to Help Ukrainian Rare Disease Patients

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,…

aHUS Diagnosed After Flu Vaccination

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…

Europe Awaits Proposed New Framework for Sharing Health Data

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…

Personalized Soliris Regimen Prevented Recurrence, Reduced Costs

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…