AHUS TRIAL WATCH 21- RAVULIZUMAB AND PREGNANCY
An unusual aHUS trial study ( No.NCT06312644) has begun which involves mothers with aHUS and their babies. The official title of…
People have always had Primary aHUS?
The disease now called Primary aHUS has existed as long as humans had complement and coagulation systems. Dinosaurs might have had…
aHUS Patient Numbers :RDD 25 Video Insights
Remember in the COVID years of 2020 and 2021 the media was plastered with COVID patient numbers. They were ubiquitous and…
All is quiet on the aHUS naming front
For several years now the naming of our disease has been discussed and new names proposed but nothing official has yet…
aHUS on rare disease day 2025
This is what Grok AI says about aHUS alliance efforts have been to promote Rare Disease Day 2025 awreness, 1. **Video…
Informação Salva Vidas – SHUa
Informação Salva Vidas - SHUa A informação para pacientes brasileiros com SHUa era quase tão rara quanto a própria doença, mas…
Modifying the name for aHUS- a to do list?
The medical community may not agree on everything but all agree on modifying the disease name aHUS.. A report published in…
FDA has a record about aHUS
In 2023 a group from the aHUS community met with the FDA to talk to them about living with aHUS and…
Discontinuation – no longer needing complement inhibition
Complement inhibition treatment discontinuation is a topic that Global Action has led on in the aHUS patient advocacy world for several…
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