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…
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…
Breaking Down Barriers in aHUS Clinical Trials
Break down in communication flows and fragmented outreach have built barriers for research and clinical trial enrollment regarding advancing new options for those with the rare disease atypical HUS (aHUS, or hemolytic uremic syndrome). The aHUS Alliance looks at current challenges, and potential pathways to explore and engage.
aHUS and TMA Study Centers
aHUS and TMA Study Centers An International List Compiled by the aHUS Alliance Atypical HUS is difficult…
Dr Ralf Reski on Moss-Made Biopharmaceuticals: aHUS Alliance Interview
The aHUS Alliance recently conducted an interview with Dr Ralf Reski, a professor and researcher in the field of…
aHUS Trials Watch 5
An update on STOPECU ( NCT02574403) -the French Study of the withdrawal from eculizumab treatment which began in late 2015. ( click…
Pathways of Patient Engagement – 4 Myths of Rare Disease Advocacy: Part 3
4 MYTHS of Rare Disease Advocacy: Digging deeper into Common Misperceptions Pathways of Patient Engagement & Recruitment…
The aHUS Registry Explained (Part 1)
From its beginning the aHUS alliance’s website has featured articles about the aHUS Registry and the work it does (click here…
Patient Engagement: A Reality or Merely Buzzwords?
Patients both desire and need to be involved at every level of their healthcare. Within the last decade there’s…