Nephmadness and aHUS
In March each year the nephrology community, supported by the American Journal of Kidney Disease, engages in an educational initiative called…
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,…
RDD23 VIDEO – RESULTS REPORT
WWW.AHUSALLIANCEGLOBALACTION.ORG 18 March 2023 aHUS PATIENTS' VIEWS ON THE ATTRIBUTION OF ADVERSE EVENTS /SIDE EFFECTS EXPERIENCED DUE TO EITHER THEIR PRIMARY…
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…
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