More countries for Global aHUS Town
Since our last report on Global aHUS Town very little has changed in the number of countries who are now aHUS…
Helping another TMA’s Initiative- CAPS
CAPS or Catastrophic Antiphospholipid Syndrome is an autoimmune and kidney disease which shares the same experience of thrombotic microangiopathy with aHUS/…
The 2024 Global aHUS Poll Progress
When conceived it was known from previous experiences that having a global poll about aHUS was going to be a major…
Meningitis outbreak and living with aHUS
A meningitis outbreak should be of particular concern to those living with aHUS. A recent outbreak in the UK was described…
Raising Global aHUS Awareness Everywhere
Raising aHUS awareness is built into the DNA of the aHUS alliance and has been from its outset and also for…
Thrombomodulin and TMA- complement inhibition or not?
It is said that thrombomodulin, or TM (AKA THBD) ,or CD141, plays only an indirect part in TMA (thrombotic microangiopathy) .…
Health economics and stopping eculizumab treatment safely
A second article in a series of four planned has just been published. It is about the health economics of treatment…
Welcoming another country to the “Global aHUS Town”
In the ever-evolving world of rare disease advocacy, each milestone marks not just progress, but hope. Today, hope takes on a…
Stopping aHUS Treatment Safely
It is over a decade ago now but I still recall vividly when, at the first meeting of what would become…
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