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…
aHUS is a rare disease and rare disease patients are said to suffer from lack of awareness of their disease and isolation. How true is that of aHUS anymore? From…
A few days ago an article appeared in The Lancet which claims to be the largest real world analysis of complement inhibitor treatment of aHUS patients. It is a retrospective…
The renaming of Primary aHUS is inevitable. The experts have said so and the name change creep, albeit unofficial, is gathering pace. How do the new names for Primary aHUS…
The Primary aHUS community now understands that there is no accurate record of how many "aHUS" patients there are , but what about the number of people who have had…
Since its inception in 2008, and celebrated annually on the last day of February, world Rare Disease Day has been an opportunity to provide information and advocacy for and about…