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…
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…
Raising Global aHUS Awareness Everywhere
Raising aHUS awareness is built into the DNA of the aHUS alliance and has been from its outset and also for…
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…
Welcoming another country to the “Global aHUS Town”
In the ever-evolving world of rare disease advocacy, each milestone marks not just progress, but hope. Today, hope takes on a…
Friendly Fire in aHUS
In the battlefield of the human body, atypical hemolytic uremic syndrome (aHUS) is a stark example of "friendly fire"—a term borrowed…
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