The disease now called Primary aHUS has existed as long as humans had complement and coagulation systems. Dinosaurs might have had it too including Tyrannosaurus Rexs. However, yrannosaurus Rexs did…
For several years now the naming of our disease has been discussed and new names proposed but nothing official has yet happened to it. It is six months since a…
Since its inception in 2008, and celebrated annually on the last day of February, world Rare Disease Day has been an opportunity to provide information and advocacy for and about…
In 2023 a group from the aHUS community met with the FDA to talk to them about living with aHUS and that meeting is still on record on the FDA…
Thank You to all Participants! View the completed Rare Disease Day 2024 project here http://bit.ly/RDday2025aHUS The background to the video is explained below. A deeper analysis of the insights will…
As another year turns in the aHUS world it is perhaps a time to reflect once more on the mission of global aHUS patient advocacy and consider its future if…
It’s been a busy 4th quarter to round out 2024 for our aHUS Alliance Global Action team, and we’d like to share a few highlights from recent publications which have…
Artigo Convidado: Pamela Notario Guest Article: by Pamela Notario (English Version below Portuguese Version) É com grande alegria que lançamos a nossa página em português para a comunidade de SHUa…