Welcoming another country to the “Global aHUS Town”
In the ever-evolving world of rare disease advocacy, each milestone marks not just progress, but hope. Today, hope takes on a…
Fairy Tale on the island of Camp-le-mont
Once upon a time, far away in the middle of a sparkling sea, there was a magical island called Camp-le-mont. Some…
Stopping aHUS Treatment Safely
It is over a decade ago now but I still recall vividly when, at the first meeting of what would become…
India had its first aHUS patient conference- what next
India has had its first patient conference. A summary of what was covered has been posted on line and reposted below.…
Is this the beginning of the end of an aHUS journey in India?
Frequently these days people talk about their "journey". I have known of the journey of an aHUS patient in India for…
Advocacy for aHUS and “aHUSs”
When it comes to advocacy why say there is aHUS and there is also aHUSs? The rare disease aHUS is described…
Mastermind on aHUS
Imagine atypical haemolytic uraemic syndrome or aHUS on a well know quiz show, say Mastermind. How would it look?--- The Mastermind…
Is there a PDA for aHUS treatment continuation?
A PDA or patient decision aid is becoming an important part of the increasing shared decision making by patients and doctors.…
Real world data on aHUS treatment discontinuation
A few days ago an article appeared in The Lancet which claims to be the largest real world analysis of complement…