Patients from around the world discuss aHUS name change
aHUS patients have been deliberately not engaged in the proposal to change the name aHUS into a plethora of thrombotic microangiopathy…
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…
Atypical HUS Research: Feb 2025 Roundup
Since its inception in 2008, and celebrated annually on the last day of February, world Rare Disease Day has been an…
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…
Is a patient organisation still needed for aHUS?
As another year turns in the aHUS world it is perhaps a time to reflect once more on the mission of…
It’s ChristmaHUS
Try the ChristmaHUS Quiz and when you finish join in with the aHUS Christmas Carol. Here’s a 20-question multiple-choice quiz on…