“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…
Letter to Alexion No. 2
14 July 2019 Dear Alexion On 1 January 2018 the aHUS alliance wrote an open letter to you ( click…
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…
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…
Eculizumab- safe or not?
aHUS patients and carers raised the research topic : "Can the side effects of treatment using a complement inhibitor be distinguished…
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