Finding new neighbours- Global aHUS Town
The search for more known neighbours in Global aHUS Town began this summer. At the start there were 59 countries where…
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…
Thrombomodulin and TMA- complement inhibition or not?
It is said that thrombomodulin, or TM (AKA THBD) ,or CD141, plays only an indirect part in TMA (thrombotic microangiopathy) .…
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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