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…
Global aHUS at the Baltimore Conference
Global Action will be attending the Foundation’s Baltimore aHUS patients conference from the 28th to the 30th April. Here you will…
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…
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,…
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