Familial Genetic Testing- aHUS Agenda Topic 2-
The series about the aHUS Research Agenda continues with second topic about familial genetic testing. When it comes to genetic testing…
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…
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…
Just saying it’s aHUS Awareness Day 2023
Yes today 24th September 2023 is another aHUS awareness day, the 9th to date. Ever wonder who is behind this international…
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