The topic of ‘changing the name of aHUS’ crops up regularly, so since people keep asking here are details which might help to greater clarity and understanding to this topic.…
It’s amazing how quickly medicine advances. For patients with some diagnoses, it seems like aspects such as new treatments or ‘standard of care’ guidelines can’t move forward quickly enough. It’s…
Scientific advancements in the last decade have yielded promising avenues on multiple fronts, including those related to atypical HUS and other thrombotic microangiopathies. However we’ve now reached a point where…
Article No. 451 4 August 2021 Following on swiftly from Article No. 450 about the current babble of names and need to rename aHUS, aHUS alliance Global Action has been…
Atypical Hemolytic Uremic Syndrome – a Rare Disease Solid, independent information on this rare disease is genuinely hard to find, and the science behind it keeps shifting as new research…
Taylor Coffman and Len Woodward are two public aHUS patient advocates who write about aHUS and the patient experience of living with it. Like many they have corresponded and collaborated…
The discussion on a new name for aHUS moves on from clinicians to whether pharma and patients might view a compromise and neither would accept a straight "no" from the…
Is there room at this stage for some compromise on a new name for aHUS? Would something like cTMA-HUS or even cTMAHUS be a good new name? Experts would probably…