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…
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…
Withdrawal – need for a consensus
Article No. 457 Yet another article about the outcome of withdrawal of eculizumab treatment has appeared. It is not about a…
What became of the aHUS 130?
Article No. 446 14 July 2021 Eculizumab effectiveness and safety in the treatment of aHUS was established in five clinical trials…
COVID 19 triggers aHUS
Article No. 444 12 July 2021 Not unexpectedly, as aHUS Global Action had postulated it in March last year, a COVID…
Evaluating ravulizumab for aHUS treatment
Article No. 442 23 June 2021 Today NICE ( The National Institute for Health and Care Excellence) concluded its evaluation of…
Decision Process: Discontinuing aHUS Treatment
Article No 441 18 June 2021 What topics and questions are likely to frame conversations about treating patients who…