Earlier this year ,when the alliance was responding to the Rare Disease Day video questions , aHUS Patient Megan contacted the alliance having read the blog about pregnancy and aHUS…
Not surprisingly, as it is one of the hottest topics* in the aHUS community, there was a high number of questions about pregnancy in the Rare Disease Day video. About…
UPDATED April 2019: New Research View the video about aHUS & Pregnancy Dr Craig Gordon on the topic of Pregnancy & TMA: A challenging Dilemma, with preface by M…
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…