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…
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…
Global aHUS Neighbours – Nepal moves in to aHUS Town.
Visitors to the aHUS alliance Global Action website may have observed a new feature on our home page. Yes a world…
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…
Advocacy for aHUS and “aHUSs”
When it comes to advocacy why say there is aHUS and there is also aHUSs? The rare disease aHUS is described…