That was the aHUS Rare Disease Day Video that was
65 questions, 29 article blogs with answers to the questions published between 7 March and 16 May and over 300 views…
Integrating a greater aHUS patient voice
A final question in the RDD2022 video series on how to integrate a patient voice of experience into aHUS Pharma and…
Difference in aHUSs
This question about difference in disease triggers and treatments from Jeff did not feature in the RDD2022 video but was given…
Future effects of aHUS and its treatment
A number of questions in the RDD2022 video are about what will happen to patients in the future due to the…
aHUS care pathway
The care pathway for aHUS patients has been looked at in detail in Global Action’s Diagnosis Process Study ( for reports…
aHUS limitations
Zinovieva asked two related questions in the RDD 2020 video The issues of what provokes ( or triggers) the development of…
Side effects of ravulizimab between infusions
Ravulizumab is more widely used these days, particularly in the PNH community. Apart from the longer infusion intervals PNH patients benefit…
aHUS Patient information and mutual support
One thing is for certain, there is much more information available about aHUS because of the internet than there was even…
Can an unknown aHUS susceptibility be passed on?
Usually inheritance questions about a HUS relate to genetic susceptibility mutations/variants/markers that are known. This one is different because it is…
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