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…
Finding neighbours in aHUS Town Second Group
The second group of 30 countries in which there could be collectively around 2250 aHUS patients is listed below. The aHUS…
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…
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…
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