An exchange about aHUS genetic counselling
Hi I don't have the aHUS gene. Hi That is good, but there is no aHUS gene so you could not…
C5 convertase blocked yet some how it is not-what aHUS is that?
It kind of makes you think how can someone, who has a complement inhibitor treatment that blocks their C5 from being…
Decision making in aHUS Health Recovery
The annual aHUS Awareness Day video ( see HERE) had a theme of best decision making in the recovery from an…
Withdrawing from treatment- patients’ perception
What is it like from an aHUS patients' perspective to decide to withdraw from complement inhibitor treatment? Much is published about…
Idiopathic aHUS- so what ?
Hi Well that was another aHUS Awareness Day. Are you aware that 40% of aHUS patients have no known genetic cause…
Discriminatory rare disease reach on social media platforms
Is social media reach to aHUS patients and families hindered because of our disease’s rareness? Rare disease patients are so few…
More countries becoming neighbours in Global aHUS Town
Hiding in plain sight were neighbours Republic of Ireland and Iceland. The south of Ireland is well known as the place…
More is known about Epysqli these days
The drug Epysqli or the version of eculizumab known as eculizumab-aagh has been available in some countries since 2024 . Although…
Health economics and stopping eculizumab treatment safely
A second article in a series of four planned has just been published. It is about the health economics of treatment…
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