aHUS Trial Watch 14
A trial has been designed by Alexion to examine the efficacy of Ravulizumab to treat those with a Thrombotic Microngiopathy ,…
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…
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…
aHUS Trial Watch 12 (crovalimab update)
Article No. 432 7 May 2021 In the past week or so, the possible trial of a new technology for treating…
aHUS uncertainty is a certainty
Article No. 423 16 March 2021 Update: Seven days after this news blog was published a further report on the ravulizumab…
aHUS Relapse: Expect the Unexpected
Atypical HUS Relapse: A Family View. Second in a 3-part series about how one family experienced the challenges of having this rare disease recur after many years 'off treatment.
Being An aHUS Trialist
Article No. 419 16 February 2021 It is spring time in 2017. You feel very unwell, very poorly. It is thought…