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Difference In differences

Article No. 295 9 November 2019 Genetics are important when it comes to aHUS. Yet genetics does not feature in the name of the disease not even the part of…

aHUS Day 2019

2019 aHUS Awareness Day, an overview of the 5th annual 24 Sept campaign to raise awareness for the ultra rare disease atypical HUS.

Remission from aHUS

Along with the question about withdrawal from Complement inhibitor treatment , aHUS patients consider that research into the state of aHUS remission ,whether ever or never treated with eculizumab ,…

Nice decision just world class

More from the reluctant advocate. The July meeting of NICE left us worried. The meeting had been held on 23rd July as planned. I attended with my fellow aHUSUK Trustee…

Finding a New Normal after Diagnosis

One mother’s personal story about her young son’s diagnosis with atypical HUS. Connected to the broader themes of what happens after a rare disease diagnosis as working parents strive to navigate, childcare, emotional stress, and family impacts.

aHUS Conference “The Dutch Approach”

The Dutch aHUS patients' conference is being held in Nimegen and the participants are gathering at the Fletcher Park Hotel Val Monte for the talks. The attendees are a mix…

aHUS Group Expectations for 2018 (continued)

Following aHUS India's response came two replies from The Netherlands and UK in Europe. Their expectations reflect a very different position on the timeline of access to eculizumab i.e. if …

aHUS Trials Watch 2

Earlier this year the alliance began a watch on trials announced which relate to treatment of aHUS. Click here for the previous news item An additional trial has been announced…