Poems for aHUS,
While sorting out some papers recently I came across a poem an aHUS patient sent me about living with dialysis. This…
Topics in aHUS Global Advocacy: Oct 2023
Keeping current with advancements in atypical HUS knowledge is important for patient families as well as clinicians, but that’s no small…
SHUa ao redor do mundo: Brasil
Temos o prazer de oferecer mais uma em nossa série de “SHUa ao redor do mundo”, onde apresentamos as notícias e…
Why aHUS for them not me?
Hey GA tell me why aHUS for them and not me? Oh hi again. Who is them?Some of my family they…
Lessons about aHUS Patient Advocacy
In the past this website featured a series of blogs which covered the story of a patient advocacy organisation in the…
aHUS meningococcal infection – vigilance essential
All aHUS patients know that when on complement inhibitor treatment they are at risk of meningococcal infection. Do they? Of course,…
Study of the aHUS Diagnosis Process- the “whys”, “whats” and “hows”
It is now over two years ago that Global Action began a major study of the aHUS Diagnosis Process, it is…
aHUS adverse events reporting
So adverse events are being reported. In USA over 4500 per year on average for eculizumab are reported to the FDA…
aHUS adverse events and patient reported outcomes
aHUS patients in clinical trials are monitored for adverse events and personal outcomes experience while on treatment. Adverse events have been…