World Kidney Day 2024 – a webinar
Today is World Kidney Day. An annual awareness day to bring kidney disease matters to the world’s attention. aHUS is a…
What the RDD24 aHUS video tells us.
The Steven Spielberg of aHUS videos (Jeff) has produce another aHUS video for RDD24. Sixty six aHUS patients /carers starred in…
Dr Leonard Bell – Before aHUS Endeavours Fade
Those new to the disease aHUS may not know the significant contribution that Dr Leonard Bell has made to their treatment…
Epidemiology – aHUS Agenda Topic 15-
aHUS epidemiology is the about how many aHUS patients there are. The numbers onsetting and surviving. It’s “Incidence” and “prevalence”. How…
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…
aHUS Trials Watch 19- Iptacopan
FDA has approved the use of Iptacopan, brand name Fabhalta, for PNH. Two trials demonstrated that this Factor B complement inhibitor…
Affordable Treatment – aHUS Agenda Topic 5
Affordable treatment is a big issue for the majority of the world’s aHUS patients. Many live in countries that cannot afford…
aHUS Trial Watch 18 – subcutaneous Ravulizumab
To the best of Global Action’s knowledge there has not been a trial of subcutaneous Ravulizumab for use in the treatment…
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…