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…
USA aHUS – treatment costs study
Access to treatment for aHUS is a global issue. Many patients find themselves in countries where their health providers will not…
Pregnancy and aHUS
The topic of pregnancy and aHUS is included in the Global aHUS Patients’ Research Agenda. It has featured in articles on…
aHUS Patient Registries Iran & ERKNet
There have been several articles about aHUS Patient Registries on this website over the years. Patient Registries are an important part…
Anti-FHs aHUS – a Disease within a Disease
The aHUS Patient community is becoming familiar with the fact that an incident of aHUS is a chance event which requires…