Advocacy punching above its aHUS weight
There is so much chat these days about what things should be like after the pandemic. Though it does seem at…
TÜRKİYE’DE Kİ; aHÜS H; ASTALIĞINA GENEL BİR BAKIŞ!
Atipik Hemolitik Üremik Sendrom kısaca aHÜS, vücudumuzun bağışıklık sisteminin ana elemanlarından olan ana savunma sisteminin de ki bir parçanın regülasyon bozukluğu…
COVID and aHUS at the end of 2021
As the year ends we are still living with COVID. It seems like it is never ending. And it is and…
aHUS Trial Watch 14
A trial has been designed by Alexion to examine the efficacy of Ravulizumab to treat those with a Thrombotic Microngiopathy ,…
One genetic problem but two diseases
Take "diacylglycerol kinase " and add a "syndrome" throw in a letter from the Greek alphabet " ε" and you have…
Atypical HUS Research: What’s New OCT 2021
We marked aHUS Awareness Day (24 Sept) with our own advocacy-based research, releasing the 1st report of data and insights from…
Ravulizumab -Superwoman juice?
The portrayal of rare diseases in the media can be both positive and detrimental. It can be sensational and political. It…
Bergamo aHUS symposium gets the go ahead
In the weeks leading up to aHUS awareness day an announcement was made which did not get the attention it perhaps…
Ecu to ravu transfer UPDATE
Update news on switching process. aHUS alliance Global Action were not aware of a prior step in the switching process to…