New name plans what the aHUS community think about them
It is aHUS Awareness Day (it started in Tuvalu first!) . The theme for this Awareness Day is the plan for…
Child’s ravulizumab adverse event no one cares
Hey I have a daughter with aHUS treated with ravulizumab and every week before her next infusion her behaviour changes and…
Cause v Effect- cTMA v aHUS
This image illustrates what the debate about renaming our disease is about- cause or effect. On the left is the complement…
Atypical HUS Facts: 2026 – Sept – 2027
Atypical Hemolytic Uremic Syndrome – a Rare Disease Solid, independent information on this rare disease is genuinely hard to find, and…
A key issue why a name change will impact – Taylor and Len chat
Taylor Coffman and Len Woodward are two public aHUS patient advocates who write about aHUS and the patient experience of living…
New aHUS name it is like squaring the circle
Hey what's new? I have found out something new , did you know that aHUS is not the official name for…
Would patients and pharma compromise on a new name for aHUS (2)
The discussion on a new name for aHUS moves on from clinicians to whether pharma and patients might view a compromise…
Would experts compromise on a new name for aHUS (1)
Is there room at this stage for some compromise on a new name for aHUS? Would something like cTMA-HUS or even…
Have you voted yet?
Do you want the name aHUS to go? Because they are going to change it. Do you want to have your…
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