Transplants, aHUS and eculizumab
The alliance has frequently featured articles about kidney transplants for those with aHUS. It was its top topic identified as a…
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…
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…
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