Bill and Cheryl Biermann -Before aHUS Endeavours Fade
The aHUS endeavours series continue with an interview with Bill and Cheryl Biermann whose family was affected by aHUS at the…
Aspirations for aHUS- a to do list.
You know how when a group forms and they create ideas of what the group can do together - they have…
Research into aHUS – an interview with a researcher
Last year Global Action brought attention to a research article ( Closing the CaHUS knowledge gap ) which stood out as…
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…
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.…
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