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?
Closing the CaHUS knowledge gap
Two days ago an article appeared in BLOOD journal which was the result of a comprehensive analysis of data about patients…
A rose by any other name revisited
One of the most widely read articles on this website has been an article about aHUS name The rose article was…
ADAMTS13 Testing: Fast 4 TMA Program
USTMA has partnered with Machaon Diagnostics to offer free ADAMTS13 testing through the new ‘Fast 4 TMA’ program for patients in…