India has had its first patient conference. A summary of what was covered has been posted on line and reposted below. Its clear and concise style makes it easy to…
aHUS is a rare disease and rare disease patients are said to suffer from lack of awareness of their disease and isolation. How true is that of aHUS anymore? From…
A few days ago an article appeared in The Lancet which claims to be the largest real world analysis of complement inhibitor treatment of aHUS patients. It is a retrospective…
The renaming of Primary aHUS is inevitable. The experts have said so and the name change creep, albeit unofficial, is gathering pace. How do the new names for Primary aHUS…
The Primary aHUS community now understands that there is no accurate record of how many "aHUS" patients there are , but what about the number of people who have had…
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…
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…
What does the internet have to say about news of change of name for aHUS? Global Action asked it, has the name aHUS been changed. This is the answer it…