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…
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…
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…