Letter to Alexion No. 2
14 July 2019 Dear Alexion On 1 January 2018 the aHUS alliance wrote an open letter to you ( click…
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…
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…
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…
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.
aHUS Connection Information Collaboration
Although there may be a few earlier dates for posts written as we were experimenting in using the website, the official…
The Birth of HUS(s) 65 years ago
The aHUS alliance’s mission highlights the importance of patient organisations reaching out and connecting with and supporting aHUS clinical researchers, who in…
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