The ethics of aHUS patient involvement.
Over the past 10 years the movement of involvement of patients in the development of medicines, their regulation and use has…
Iceland and aHUS
Nearly 400,000 people live in Iceland. At normal prevalence levels there should be two aHUS patients. There are at least three…
Nephmadness and aHUS
In March each year the nephrology community, supported by the American Journal of Kidney Disease, engages in an educational initiative called…
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 is confusing
Sometimes it can be confusing being an aHUS patient. Even to knowing whether you are really an aHUS patient. Even if…
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