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…
The Steven Spielberg of aHUS videos (Jeff) has produce another aHUS video for RDD24. Sixty six aHUS patients /carers starred in…
Those new to the disease aHUS may not know the significant contribution that Dr Leonard Bell has made to their treatment…
aHUS epidemiology is the about how many aHUS patients there are. The numbers onsetting and surviving. It’s “Incidence” and “prevalence”. How…
In September last year a group of aHUS patients and parent/carers met with FDA and told them about aHUS. A summary…
FDA has approved the use of Iptacopan, brand name Fabhalta, for PNH. Two trials demonstrated that this Factor B complement inhibitor…
Affordable treatment is a big issue for the majority of the world’s aHUS patients. Many live in countries that cannot afford…
To the best of Global Action’s knowledge there has not been a trial of subcutaneous Ravulizumab for use in the treatment…
For aHUS patients stopping eculizumab (or even Ravulizumab) treatment is an important but emotive issue. Having had the treatment when seriously…
Algorithms to diagnose aHUS apart from other syndromes of TMA exist, but why do these tools with problem solving steps seem under-utilized?