TO STOP OR NOT TO STOP – THAT IS THE QUESTION?
You have had aHUS. The type of aHUS caused by uncontrolled complement, not the other type. You got access to a…
The KDIGO “aHUS” Guidelines have arrived
The long anticipated KDIGO Guidelines from the Controversies Conference held in Florence in September 2022 are now published. The report can…
Family Planning- aHUS Agenda Topic 14
Pregnancy is a common trigger of aHUS, this can impact on someone who is predisposed or related to someone predisposed to…
AHUS patients met with FDA and this is what they said
In September last year a group of aHUS patients and parent/carers met with FDA and told them about aHUS. A summary…
Cure – aHUS Agenda Topic 9
A cure for aHUS would mean an individual would be at no risk of the disease again. Patients ask Will there…
A New Year and new to aHUS
It’s 2024. A New Year.This year around the world about 4000 people will newly onset with the primary form of aHUS.…
ChatGPT and aHUS Christmas chat ( and an aHUS carol)
Last year at this time Global Action published an article recording a conversation we had with ChatGPT ( an AI thing)…
aHUS – Stopping eculizumab treatment safely
For aHUS patients stopping eculizumab (or even Ravulizumab) treatment is an important but emotive issue. Having had the treatment when seriously…
Algorithms: Steps to Diagnose aHUS & other TMAs
Algorithms to diagnose aHUS apart from other syndromes of TMA exist, but why do these tools with problem solving steps seem under-utilized?