aHUS Registry Report: (aHUS) Registry
The alliance relationship with the atypical Hemolytic-Uremic Syndrome( aHUS) Registry (NCT01522183) is now well into its fifth year. This observational non…
Eculizumab Safety
Following on from its recent article about the safety of eculizumab ( see here ) the alliance has looked at two…
“Away from home” Eculizumab infusions
Within the aHUS Patients' Research Agenda is a topic about how aHUS affects work and school. A big question with so…
aHUS Awareness Day 2019 -Video
2019 aHUS Awareness Day - Atypical HUS families around the world are invited to participate in this aHUS Alliance outreach & advocacy project for 24 September. Slideshow project details for patients and caregivers affected by the rare disease aHUS.
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…
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