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 Diagnosis Process – Report 2
The second article in the series about the aHUS Diagnosis Process has been published on the website today. Research made possible…
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…
Living with aHUS- what would you say?
If asked by health policy decision makers, and with a 500 words limit, how would you answer the question "how does…
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…
Ravulizumab is not quite eculizumab
Ravulizumab is becoming a treatment of choice for aHUS in countries where access is funded. Though eculizumab will still have a…
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…