India has had its first patient conference. A summary of what was covered has been posted on line and reposted below. Its clear and concise style makes it easy to…
When it comes to advocacy why say there is aHUS and there is also aHUSs? The rare disease aHUS is described as the thrombotic microangiopathy triggered by uncontrolled complement activity…
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…
A frequent discussion on aHUS social media platforms is about "probabilities" and "percentages". The probabilities of someone inheriting an aHUS predisposing variant ( mutation) from their parents and the percentage…
A PDA or patient decision aid is becoming an important part of the increasing shared decision making by patients and doctors. How do patients prepare themselves for a discussion on…
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…
What follows is an imagined "dinner party conversation" about atypical hemolytic uremic syndrome (aHUS) among aHUS pioneers—Professor Conrad von Gasser, Professor Tim Goodship, Dr. Lenny Bell. With the author also…