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…
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.
BB5.1 aHUS connection to c.3643C>G; p. Arg1215Gly
Article No 413 23 January 2021 Very few people have heard of BB5.1 nor even c.3643C>G; p. Arg1215Gly. Yet both are of…