Baltimore -aHUS First Since COVID
Zoom has helped with keeping aHUS advocacy going during the restrictions resulting from the COVID pandemic. Starting a zoom meeting always…
Is incidence of aHUS really “2 per million”?
I know it should not matter so much but whenever I see incidence and prevalence figures for aHUS in articles etc,…
aHUS Community Advisory Board News
Two updates on the Global aHUS Community Advisory Board. There is some information about the inaugural set of CAB / PHARMA…
aHUS trial watch 17- NM8074
Another trial of a complement inhibitor for aHUS treatment has been announced , it is for something currently called NM8074. Full…
A call for interest in joining the aHUS CAB
This time last year a couple of dozen people with an interest in global aHUS advocacy were discussing and deciding on…
aHUS what is really happening?
Listening to some aHUS people on social media there is a sense that all are not satisfied with what is happening…
HST TMA Is It aHUS ?
- An Hematopoietic Stem Cell Transplant (HSCT) is a way to treat some malignant and benign diseases. The transplant replaces disease…
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 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…
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