Atypical HUS CAREGIVERS
Atypical HUS families emphasize and embody the ‘care’ portion of the word ‘caregiver’. Many of those caring for someone with atypical…
TMA: the Need for a Multidisciplinary Team Approach
Can MedEd Encourage Specialists to Form TMA Teams? Tiny clots which form in the body’s small blood vessels - in brief,…
Living with aHUS- what would you say?
If asked by health policy decision makers, and with a 500 words limit, how would you answer the question "how does…
Atypical HUS Research: What’s New OCT 2021
We marked aHUS Awareness Day (24 Sept) with our own advocacy-based research, releasing the 1st report of data and insights from…
Good complement goes aHUS bad
OK, so HUS is caused by e.coli toxins and aHUS results from Complement dysregulation. Both are thrombotic microangiopathies. HUS is…
Ravulizumab -Superwoman juice?
The portrayal of rare diseases in the media can be both positive and detrimental. It can be sensational and political. It…
Bergamo aHUS symposium gets the go ahead
In the weeks leading up to aHUS awareness day an announcement was made which did not get the attention it perhaps…
Ravulizumab is not quite eculizumab
Ravulizumab is becoming a treatment of choice for aHUS in countries where access is funded. Though eculizumab will still have a…
Ecu to ravu transfer UPDATE
Update news on switching process. aHUS alliance Global Action were not aware of a prior step in the switching process to…
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