A second article in a series of four planned has just been published. It is about the health economics of treatment discontinuation. Led by Giovany Orozco-Leal the article can be…
It is over a decade ago now but I still recall vividly when, at the first meeting of what would become the aHUS alliance in 2013, the representative from Italy…
Stopping aHUS treatment when no longer needed is a big decision for patients. Global Action put the patients research agenda question to our expert. Can a complement inhibitor be stopped…
For aHUS patients stopping eculizumab (or even Ravulizumab) treatment is an important but emotive issue. Having had the treatment when seriously ill and then recovered, no one wants to go…
Not many people will have heard of Donal O'Donoghue, He was a nephrologist from the North of England. He was a professor and very respected. When the role was introduced…
Once more the aHUS Alliance Global Action team presents a brief overview of new publications just added to our ‘Atypical HUS Virtual Library’. As an international group of aHUS patients…
As any DGKE patient old enough or any family members know it is simply that : p.Trp322* (c966 D>A) is one at least 24 genetic mutations in one of the…
There are two sets of patient groups affected by an aHUS name change. Those who have had it and already been diagnosed with it and those who have not yet…