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…
Variants of uncertain significance (VUS) for aHUS
If or when aHUS patients or their families are tested for complement genetic variants which could be the cause of their…
Poems for aHUS,
While sorting out some papers recently I came across a poem an aHUS patient sent me about living with dialysis. This…
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…
Medication Guide Eculizumab
Have you ever seen or read the medication guidance for using Eculizumab, or even Ravulizumab? There is one in every vial…
Review of the research that matters to aHUS patients (Part 2)
When this review of the aHUS patients research agenda began, the question was asked "is a patient research agenda worth while?".…
Review of the aHUS patient research agenda (Part 1)
During December and January last, there has been a review of each of the 15 topics in the patients research agenda.…
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…
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