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…
Good complement goes aHUS bad
OK, so HUS is caused by e.coli toxins and aHUS results from Complement dysregulation. Both are thrombotic microangiopathies. HUS is…
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…
Call to action USA aHUS Patients
In Article 462 notice was given of a study to help USA rare disease patients in general. and aHUS patients in…
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