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…
TMAs -How many are there?
The Primary aHUS community now understands that there is no accurate record of how many "aHUS" patients there are , but…
People have always had Primary aHUS?
The disease now called Primary aHUS has existed as long as humans had complement and coagulation systems. Dinosaurs might have had…
aHUS Patient Numbers :RDD 25 Video Insights
Remember in the COVID years of 2020 and 2021 the media was plastered with COVID patient numbers. They were ubiquitous and…
All is quiet on the aHUS naming front
For several years now the naming of our disease has been discussed and new names proposed but nothing official has yet…
Modifying the name for aHUS- a to do list?
The medical community may not agree on everything but all agree on modifying the disease name aHUS.. A report published in…
Is a patient organisation still needed for aHUS?
As another year turns in the aHUS world it is perhaps a time to reflect once more on the mission of…
aHUS etc dip into ASH 2024
Some of the latest aHUS, CM-TMA and TMA research being displayed at the American Society of Haematologists , ASH, conference 2024…