Historical branches-aHUS in the Family
aHUS is known as a family illness. It was seen as something different from HUS when different family members experienced it…
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…
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…
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