Cause Factors- aHUS Agenda Topic 1
"What the heck hit me to cause that and why" are not an unreasonable question for aHUS patients to ask. Collectively…
Is an aHUS patient research agenda worthwhile?
aHUS patients have a global research agenda. Work began on it in 2015 and after three iterations involving more than 200…
Could there be a LONG aHUS like LONG COVID?
We asked an expert “ Have you heard about Long COVID? Given the similarities could there be a LONG aHUS?” This…
KDIGO and aHUS treatment guidelines
KDIGO stands for Kidney Disease: Improving Global Outcomes. It is a global nonprofit organization that develops and publishes clinical practice guidelines…
aHUS – Stopping eculizumab treatment safely
For aHUS patients stopping eculizumab (or even Ravulizumab) treatment is an important but emotive issue. Having had the treatment when seriously…
Closing the CaHUS knowledge gap
Two days ago an article appeared in BLOOD journal which was the result of a comprehensive analysis of data about patients…
Immunocompromisation- is it aHUS?
Immunocompromisation is a hall mark of aHUS. For those who are predisposed to it and for those who have had it…
Complement inhibitor users it’s World Meningitis Day
It is important that those using complement inhibitors remain alert to meningococcal infection a life threatening side effect of their use.…
What are aHUS people capable of?
About 4000 people around the world have had aHUS since the last aHUS awareness day. Many did not survive, they were…
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