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…
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) .…
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…
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…
Stopping aHUS Treatment Safely
It is over a decade ago now but I still recall vividly when, at the first meeting of what would become…
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