It’s Time to re-Define aHUS Patient Engagement
Reaching out to Bridge Current Gaps As complement research has progressed and more is understood about thrombotic microangiopathy, it’s interesting that…
aHUS Trial Watch 14
A trial has been designed by Alexion to examine the efficacy of Ravulizumab to treat those with a Thrombotic Microngiopathy ,…
One genetic problem but two diseases
Take "diacylglycerol kinase " and add a "syndrome" throw in a letter from the Greek alphabet " ε" and you have…
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…
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