Dialysis Diaries: Heart Problems
Atypical HUS patients who have progressed to kidney failure and do not have access to a complement inhibitor like Eculizumab have…
Global Patient Advocacy-aHUS ROW
When the six European national aHUS organisations gathered in February 2013 for the first meeting of what was to become the…
aHUS Trials Watch 8
Cemdisiran has been a possible candidate drug for aHUS for some time. Alnylam the pharmaceutical company responsible for its development, withdrew…
aHUS Registry Report: ERKNet
The aHUS alliance has a long association with the Global aHUS Registry and has a place on its Scientific Advisory Board…
Dialysis Diaries: Diet and fluid restrictions
(Disclaimer: The information provided here is only indicative. Please check with your doctor or dietician for individual "best practices". There is no single…
ERKNET Patient Communication Failure Continues
Yet another ERKNet Annual Meeting took place in Heidelberg , Germany in May 2019. In over a month since it was…
Eculizumab- safe or not?
aHUS patients and carers raised the research topic : "Can the side effects of treatment using a complement inhibitor be distinguished…
Dialysis Diaries
Atypical HUS affects about 2-3 per million population according to some estimates. Eculizumab, sold under the brand name Soliris by Alexion…
2019 aHUS Awareness Day -24 Sept
24 September 2019 marks the 5th annual aHUS Awareness Day, created by the aHUS Alliance to raise visibility for issues and needs of those impacted by the rare disease atypical hemolytic uremic syndrome (atypical HUS or aHUS). 'Family and Community Support' is this year's theme, with a 2019 global Call to Action: Support for blood & organ donation.
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