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…
What’s New in aHUS Research: Summer 2025
The aHUS Alliance Global Action team remains strong advocates for those affected by the rare disease atypical HUS, and proudly partners…
Registries for the rare disease aHUS
Global Action has more than any other organisation promoted the research registries that exist for our rare disease. Many rare diseases…
Atypical HUS Research: Feb 2025 Roundup
Since its inception in 2008, and celebrated annually on the last day of February, world Rare Disease Day has been an…
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…
Trial Watch 20- ClinicalTrials.eu
The Global Action series “Trial Watch” has in the past covered several trials of treatments for aHUS patients and even some…
What’s New in aHUS Research – June 2024
As sometimes happens in life, things can arise as a group that makes people take a bit more notice than if…
The KDIGO “aHUS” Guidelines have arrived
The long anticipated KDIGO Guidelines from the Controversies Conference held in Florence in September 2022 are now published. The report can…
aHUS as a rare disease 10 years ago
10 years ago global information about aHUS patients was more or less non existent. Vey sparse at best. An aHUS alliance…
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