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…
India had its first aHUS patient conference- what next
India has had its first patient conference. A summary of what was covered has been posted on line and reposted below.…
Is this the beginning of the end of an aHUS journey in India?
Frequently these days people talk about their "journey". I have known of the journey of an aHUS patient in India for…
A patients perspective of aHUS name change
For the past nine years Global Action has been at the forefront of featuring the aHUS name change journey. Currently proposals…
Global Poll for aHUS – Progress Report
Last Summer nearly three hundred aHUS people from around the world participated in the 2024 Global Poll. They filled in a…
Real world data on aHUS treatment discontinuation
A few days ago an article appeared in The Lancet which claims to be the largest real world analysis of complement…
AHUS TRIAL WATCH 21- RAVULIZUMAB AND PREGNANCY
An unusual aHUS trial study ( No.NCT06312644) has begun which involves mothers with aHUS and their babies. The official title of…
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