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…
aHUS on rare disease day 2025
This is what Grok AI says about aHUS alliance efforts have been to promote Rare Disease Day 2025 awreness, 1. **Video…
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…
FDA has a record about aHUS
In 2023 a group from the aHUS community met with the FDA to talk to them about living with aHUS and…
Discontinuation – no longer needing complement inhibition
Complement inhibition treatment discontinuation is a topic that Global Action has led on in the aHUS patient advocacy world for several…
RDD25: MORE THAN YOU CAN IMAGINE!
Thank You to all Participants! View the completed Rare Disease Day 2024 project here http://bit.ly/RDday2025aHUS The background to the video is…
It’s ChristmaHUS
Try the ChristmaHUS Quiz and when you finish join in with the aHUS Christmas Carol. Here’s a 20-question multiple-choice quiz on…
Treatment Discontinuation- do doctors and patients think alike?
Recently a novel article about complement inhibitor treatment discontinuation was published. Novel because of the research method used to produce its…
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…