The rapid development of aHUS knowledge and its treatment in China
Until eight years ago China had no policy on the care of people with rare diseases. There were discussions about it…
What’s New in aHUS Research – Dec 2025 Edition
Keeping track of medical advancements in the rare disease space is challenging, but for those interested in atypical HUS the aHUS…
Withdrawing from treatment- patients’ perception
What is it like from an aHUS patients' perspective to decide to withdraw from complement inhibitor treatment? Much is published about…
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…
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