TED Talk: Thriving Beyond Dialysis – A Journey of Hope and Resilience
What image comes to your mind when you hear the words ‘dialysis patient’? Most likely it’s not what you’ll see and…
aHUS Global Advocate Newsletter: Nov 2023
Keep up to date with the aHUS Global Advocate newsletter, Volume 8 edition for November 2023. FMI: Learn how to obtain your free subscription.
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…
Algorithms: Steps to Diagnose aHUS & other TMAs
Algorithms to diagnose aHUS apart from other syndromes of TMA exist, but why do these tools with problem solving steps seem under-utilized?
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…
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