Serious Infections- aHUS patients are their own early warning system
An article appeared last month about practical things that need to be done to limit the risk for complement inhibitor users,…
A month of ravulizumab use adverse events
The Food and Drugs Administration has a database of adverse events (AEs) reported for all the drugs in use. It is…
Plain language summary of an aHUS Clinical Trial
This is a plain language summary of the final article to be published about Stopping Eculizumab Treatment Safely Clinical Trial. The…
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…