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…
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…
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.…
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…
Family Planning- aHUS Agenda Topic 14
Pregnancy is a common trigger of aHUS, this can impact on someone who is predisposed or related to someone predisposed to…
Active life -aHUS Agenda Topic 13
An illness like aHUS can have an impact on a normal active life during the acute stage of the illness and…
Mental health – aHUS Agenda Topic 12
Mental health is an extensive issue of modern times focusing on depression and anxieties. The inverse of depression is self-esteem how…
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