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Mastermind on aHUS

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…

Percentages and probabilities -AHUS AND MATH(S)

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…

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. How do patients prepare themselves for a discussion on…

aHUS Nomenclature: Bridges to the Future

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…

TMAs -How many are there?

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…

aHUS pioneers – Named it, Explained it, Treated it,

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…

Familial Impact – RDD 25 video insights

The second part about the insights arising from the RDD25 aHUS video is about the rare disease familial impact. (Note: Part 1 link HERE.) How does it impact and on…

All is quiet on the aHUS naming front

For several years now the naming of our disease has been discussed and new names proposed but nothing official has yet happened to it. It is six months since a…