The role of Positive Health in the Dutch approach to aHUS
A new definition of Health: "Health as the ability to adapt and self-manage, in light of the physical, emotional and social…
Dialysis Diaries: Long Term Complications
The kidneys are wonder-organs. They do so many different things. They impact so many life-processes. It is impossible for individuals…
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…
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…
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