The rapid development of aHUS knowledge and its treatment in China
Until eight years ago China had no policy on the care of people with rare diseases. There were discussions about it…
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…
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) .…
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