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…
An aHUS Game Changer
A new blood test for aHUS could be a game changer for those who have been diagnosed with aHUS only to…
An eculizumab biosimilar for USA
Global Action has received this notice from the FDA. Cannot find a price or evidence from an aHUS trial as yet.…
aHUS in poetic verse. #3
For the third in this series of aHUS in different genres we sought poetic verse in the style of Shakespeare, Keats…
aHUS in modern music genre. #2
Continuing the theme of aHUS in verse we looked at different music genre and asked for RAP , Country , Blues…
aHUS’ “Beacon in the night” – #1
Last Christmas we published an AI carol about aHUS. For some “light” insights into the disease we have used AI once…
aHUS as a rare disease 10 years ago
10 years ago global information about aHUS patients was more or less non existent. Vey sparse at best. An aHUS alliance…
Is it OK to spend $2 billion plus on aHUS patients?
OK. Imagine yourself as an aHUS patient and advocate for other aHUS patients in your country and you have been asked…
Ambitions for Rare Diseases are aHUS ambitions too
Below is a “framework of ambitions” for those with rare diseases which appeared on Rare Disease Day 2024 (see link below…