Once upon a time, far away in the middle of a sparkling sea, there was a magical island called Camp-le-mont. Some say it existed in the era of the dinosaurs.…
Imagine atypical haemolytic uraemic syndrome or aHUS on a well know quiz show, say Mastermind. How would it look?--- The Mastermind studio lights dim slightly as Emily Bartley settles into…
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…
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…
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…
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…
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…
Recently I wrote an article about a clinical study which is an Ravulizumab pregnancy registry in the USA. Then tried to imagine what a topic like that would look like…