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…
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…
Grumbling aHUS
Hi my aHUS just grumbles. Hi just grumbles you say. Yes it like smoulders not going out, then bubbles up ,…
Knowledge of aHUS – a Mountain to Climb
When it comes to knowledge of rare diseases patients are frequently critical of the level of knowledge of their treating clinicians.…
A CALL for aHUS/cTMA community support for an aHUS Day event.
aHUS Day will be on 24th September. It is for all the aHUS/cTMA community. The day has been set to raise…
From aHUS Ashes: Rise of the Phoenix
Three journeys - among so many - lives transformed by one of the world's rarest diseases When atypical Hemolytic Uremic Syndrome…
Withdrawing from treatment- patients’ perception
What is it like from an aHUS patients' perspective to decide to withdraw from complement inhibitor treatment? Much is published about…
Discriminatory rare disease reach on social media platforms
Is social media reach to aHUS patients and families hindered because of our disease’s rareness? Rare disease patients are so few…
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