A month of ravulizumab use adverse events
The Food and Drugs Agency have 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…
Since You Asked: aHUS NOMENCLATURE
The topic of ‘changing the name of aHUS’ crops up regularly, so since people keep asking here are details which might…
Rare Disease Day 2026: Many Voices, One Global Movement
Rare Disease Day 2026: Many Voices, One Global Movement Since 2015, the aHUS Alliance Global Action team has been right there…
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…
The Hidden Burdens: Living with Atypical HUS
Hidden Burdens: Living with aHUS When most people hear about a rare disease diagnosis they think primarily about medical challenges, but…
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